About The Episode:
Molly Weisgram tells the story of the day her family woke up and the life they had, completely changed. Learn what Guillain-Barré Syndrome is, and how it affects the person under the diagnosis. Molly explains how her and her family learned through education and awareness from diagnosis to recovery.
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About Molly Weisgram:
Molly Weisgram is the author of The Other Side of Us: A Memoir of Trauma, Truth, and Transformation, a beautifully crafted story about a young family that faces the unimaginable, a sudden and traumatic health crisis. Molly’s husband becomes a quadriplegic on a ventilator in a matter of days with no promise of a full recovery. When it seems all is lost, they begin the eventual climb to a new life. In The Other Side of Us Molly takes readers to the depths of calamity and to the heights of restoration. Molly earned her undergraduate degrees in English and Psychology and her master’s degree in Communication Studies from the University of South Dakota. She studied with the Centers for Spiritual Living and graduated from its Spiritual Practitioner Program in 2017. The Other Side of Us is her debut book.
Molly Weisgram lives in Fort Pierre, South Dakota, with her husband Chris Maxwell and their four children: Benjamin, Samuel, Isaac and Hannah. In addition to her children’s laughter, Molly’s favorite things include soul searching, nature, and happy hour. She believes life is not about disease but about recovery.
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Refocusing your life after Major Trauma Strikes | Molly Weisgram
We’re going to go through a lot of things around trauma and getting yourself to the point where you can function in life and kill a lot of those things that are holding you back. At least that’s what I’m hoping for. Share this show with three people you know that might enjoy the content because that’s the only way that we grow, reach and help more people. You’ll especially want to share this because my guest is the author of The Other Side of Us: A Memoir of Trauma, Truth and Transformation. She has degrees in English and Psychology and a Master’s Degree in Communication Studies. She studied with the Centers of Spiritual Living. It’s a wealth of knowledge here around this topic.
Molly Weisgram, welcome.
Thank you so much. I’m excited to be here.
Me too. I’ve gone through some work in the past around traumas of mine. A lot of mine stemmed from my father’s passing when I was sixteen, literally all of it, and there are probably some microtraumas. I’m thinking because I’ve noticed now that I’ve gone through this process that there’s a lot that doesn’t even know that their lives are being run by their trauma. What’s the first step of awareness you would think of to notice that, “There’s something I need to address here/”
My trauma was a little different and I will tell that story but I had an immediate in my face and had to deal with it thing with an elongated period of trauma. I do think that trauma, as the after-effect, can create ways that we act. We’re trying to avoid these moments and avoiding it one time or dealing in a certain way at one time worked. It worked for us and that’s how we had to do it. I think there’s a moment of inventory that’s helpful because our behaviors may not serve us anymore. I always think an inventory is an important opportunity but to say, “Why am I doing that? What is it helping me avoid? Is it helping me cope with something that happened a long time ago? Is it helping me?”
The behaviors that are not serving you anymore and I believe everyone has those. You’ve had your own journey through this.
I have. Our trauma happened a few years ago. That’s very notable that I ended up writing a book about it. I think I’m still sifting through. I look at life as like this opportunity to recover. We’re constantly recovering and I don’t see that as a bad thing. On my website, it says, “There’s this constant illness or trauma that happens in a constant recovery.” The recovery part is an amazing opportunity because it can be a reinvention of who we are or reassembly after we get broken down into something intentional. We choose it that way. I’m still probably in that period after a few years of a huge trauma in our lives. I’ve certainly become a different person but I’m also in that inventory period of like, “What still trauma can relate to behavior? Where do I want to go from here? What do I want to be after this?”
Do you mind sharing what the trauma was?
In 2019, Valentine’s Day, my husband was diagnosed with a rare autoimmune disorder called Guillain-Barré Syndrome. I had never heard of the Guillain-Barré Syndrome before. It jogged my memory because when I’ve gotten flu shots in the past, there is a disclaimer, “Have you ever had Guillain-Barré Syndrome?” At the time, I would never know how to even pronounce it, which jogged a memory. Other than that, it had never crossed even my realm of awareness. February 14th is his diagnosis date. I didn’t know anything about any symptoms he had been experiencing, probably for a couple of days before that.
His symptoms were tingling hands and feet. I was like, “I guess that’s weird. Do you want to go to the doctor?” I tested him like, “Are we going to go to the doctor?” He’s like, “I already made an appointment.” I was like, “Okay.” We have four kids. At that time, our youngest was eight months old and we’re still getting adjusted to life with four kids and jobs and whatever. We didn’t talk too much about his symptoms and what he was thinking about it. We literally were making dinner, getting people vaped, finishing up all the work that we had. It wasn’t a big deal until we stayed in the hospital on February 13th for observation because the physician in town who were lucky enough that he was aware of it. He could sense something was off.
We stayed for observation and by the next day, my husband had no reflexes. They had consulted with neurology in our Tertiary Care Center three hours from our home because we’re in South Dakota. Where we live, we needed to go three hours away to have that specialty care. I was like, “Guillain-Barré Syndrome, tell me what you know, what’s that?” Chris and I both heard the physician say, “Basically, your body probably had some simple virus or bacteria or something like that. What happens with the Guillain-Barré Syndrome is the body gets confused and essentially goes after the nerve in your own body, your nervous system versus the bacteria or virus. Essentially, what that does is it eats up the code thing of your nerves so your brain can’t send messages to the different parts of your body to then move it.”
There are varying degrees of severity. Yet the physician said, “With Guillain-Barré Syndrome, 90% to 95% of people get back to their life. You may have some recovery ahead of you.” It’s that calming feeling and I’m so thankful. After he walked away, I looked at my husband, I put my hands on his shoulders and I was like, “This is going to be the best thing that ever happened to us, just watch. We’re going to be better people because of this. We’re going to do this.” It’s something about framing that I think is important. I didn’t even remember I’ve said that but it had been a practice verse.
I didn’t realize how severe it was or what it was going to get. There’s a spectrum of everything and sometimes people might be hard to walk and might need physical therapy for recovery. Anyway, it ended up that five days later, my husband was completely quadriplegic on a ventilator. Yet I was still like, “Google says it’s 2 to 4 weeks and then you start recovering so there’s still recovery.” We had a physician come in who basically had to break the news that this was severe like an off-the-charts case where not only was there damage to the outside coding of nerves but also to the nerves themselves.
It could be months, weeks, years that he would be in his quadriplegic state. We don’t know. It’s a waiting game. Waiting games are tough. To watch your loved one be in incredible pain, completely mentally with it and this feeling trapped in your body. It was bad and then it got worse. I thought if your arms and legs can’t move, you’re paralyzed. This was so bad that even the muscle in his eyelids would no longer activate and his eyes were wide open. He couldn’t blink. Our children were home three hours away from us and it wasn’t like we were sitting and waiting.
He was in screaming pain even though he couldn’t speak. We had to find ways for him to communicate. We taped a laser to his glasses and he was able to move his head and point to different letters. We’ve tried to translate his thoughts or needs through that but he was in incredible pain. Not only that, before he then no longer can even move his head and his eyes couldn’t blink, we were able to decipher that. When you have this nervous system damage, your brain can’t create the messages so it starts to tell your body literally physical symptoms of things that aren’t happening.
He’s now explaining that he feels like his head is in a cage with his torso balancing on top of it. He feels like there’s a wooden stick going through his foot. It was horrible. There’s so much to this story. This was the acute situation at that tertiary care center. We knew we had to get him to rehab somehow but in South Dakota, he couldn’t go to a rehab center that took people on ventilators because he was still on the ventilator. We transferred him to a facility in Nebraska that was about seven hours from our home. He ended up being ventilated for fifteen weeks. A quadriplegic for longer but his recovery ended up taking nine months or so before he was able to come home.
He’s home and he’s doing amazing but it was up to me to be the person to keep it together. In terms of working and running our household, children and trying to figure out what are we going to do? My husband owns a small company. How do you keep going when someone is gone but they’re not gone and they still need your care too? I don’t know if I’m explaining the depth of guttural icky stuff. What I know from that trauma was the way I coped in the midst of it was I removed myself from my feelings.
I didn’t intentionally do that but I needed to go to the end of the spectrum of logic because if I let that emotion in, I think I would have been so crippled that I couldn’t have done what I needed to do at that time. The emotions started to come later. That’s what I’m starting to experience again. I’m starting to experience feeling, which sounds weird. I’m sure there will be an element of trauma that I take with me throughout my whole life. I don’t mean to say that as pessimistic but life is about recovery. You were constantly recovering from those things and they probably do make us better somehow too when we have the right perspective on them. I’m still learning about recovery from trauma.
There’s a lot of depth to everything but you’re doing amazing at describing this. You’ve captured me in this too. You shut your emotions down and went to the side of logic. Is that a natural response when you’re in the midst of something like this?
Here’s what my observation was. I don’t know if this is true but here’s what I thought that it’s about. I think you go to what you’re good at in those times. You lean toward the things that you do when you’re under stress. For me, when I’m under stress, I become a control freak. I want to have it all down. For me, it was soothing to do things like paperwork.
It wasn’t a bad thing but it was a control thing. When I was ready to let my kids in, I didn’t want the kids to have to come and see him that way if I didn’t have to. It’s going to be a couple of weeks then they’ll be able to see him after that. When he’s off the ventilator, they can come to see him. It’s too scary. When I realized, “This is a super severe case. There’s no way I can protect them from this.” That’s when I started accessing all the resources at the hospital and querying different ways that kids deal with trauma. I want to bring them in. I was going to set up a tour for them to see the hospital, maybe see pictures of people ventilated.
I wanted to script it and control those things that were healthy and helpful to them. Unlike my personality, I’m a deep detail person at work. I’m the person who’s sequencing things. I don’t know if it’s true that everyone goes to what they do on stress or maybe goes to what is soothing for them. I watched my mother-in-law who was there with us every step of the way and what suits her is relationships. Honestly, she was comforting to other patients because she sat in the different waiting rooms, visited with folks and almost administered to them. It was her ground where she was able to share a story, empathize with others as they shared theirs and that gave her energy. I found myself being like, “I don’t want to talk. I want to get stuff done.” I don’t know if that’s a thing but that was certainly my observation.
Did it serve you to shut down your emotions in those moments?
At that time, absolutely. It’s the point at which it no longer serves you. It did because I was trying to be productive. I could have made unhealthy choices but I think all my choices were made to create a healthier situation. In that case, it probably did serve me. My husband came back home basically at the beginning of November 2019. That is something that you would think would be the most joyous of times mostly like a wonderful recovery. It was, don’t get me wrong. We had been given that forewarning that the homecoming can be hard.
You both have these traumas. Everybody’s had trauma and my mind was different than Chris’ and then the kids have their own. We literally lived a year apart with completely different experiences even though it was Guillain-Barré and that situation that triggers it. He talks about it like, “I didn’t realize how I looked.” He lost 60 pounds and had had things suctioned out of his mouth constantly and the eyes. It was scary. He’s like, “I had no idea.”
In my mind, he’s like, “I was in these dreams.” There’s an ICU delirium but he had a lot of pain drugs. He’s like, “I was on these fabulous adventures.” I’m not saying it because he had a fabulous time but I am saying we had a completely different way of experiencing it but we also had a completely different way of coping. When I realized that turning off my emotions wasn’t as helpful was when he returned. I couldn’t quite feel the joy of his homecoming but I also couldn’t feel the depth of that trauma that we’d been in either. I allowed myself this middle range, cool, calm and collected at all times. There was a floor and a ceiling to what I could feel.
That was a coping thing for me. That’s where you come into this joy and suffering. They’re not unrelated. It can’t be. Until I could start to allow myself even to cry but I couldn’t cry. I was numb. Until I started feeling safe enough and COVID didn’t help any of that. He returned on November 19, 2019 and then COVID hits a couple of months later. In my mind, Chris is at risk because this is a respiratory deal. He was ventilated for months and months. had traits. I assumed he was at risk because, in my mind, he was always at risk. I felt like I needed to protect my family but I also couldn’t feel like I could be close to him because I might lose him. Those things still protected me but at what point did I need them not to protect me anymore because they were taking me away from other things?
That’s an interesting concept there too as I’m hearing this. That middle ground, my coach calls it the safe place of suffering. It’s true because you’ve got these two different ends of the spectrum but where that almost survival mode is the subconscious thing, as he calls it, is that it’s the safe place of suffering but it’s a controlled space as he also calls it too. The other thing that you said that was interesting towards the end is that you didn’t feel like you could get that close to him because you also thought that you were going to lose him, which was also protection from what it sounds like. It’s shielding yourself from what you feel is going to happen in the future. Did that take you out of the present moment too?
It’s all blurred in with COVID. Our family hadn’t been together for a year. We suddenly have this situation. We’re all busy but we’re not home that much typically. Everybody’s out there in different places and we’re suddenly home after basically not been home together for a year. In some ways, it was very in the moment. Chris and I talk about this all the time where it was confusing. It felt like we weren’t in the moment is when we kept missing each other. I had built my coping mechanism to create distance and I didn’t even realize it. He’s come to the conclusion that he’s coping because this is how he is.
He’s a very naturally positive person. One of his top strengths and strike finders type of thing, positivity. He recovered the way he did because he put himself in a bubble of positivity. “No one is taking my hope away from me. I will see the positive in every single thing of this.” That was good. He was creating that safety place for him to grow, develop and basically regenerate but I was in a place of risk management. Where we clashed was me always saying, “This could go wrong. Here’s what I’m going to do in order to mitigate that.” My husband was like, “We’re going to high five all day long.” It felt to me like I did my very best in the midst of all of that. It was about me realizing that the situation had changed and I could also change my behaviors or my outlook. It takes some time to create that expansion of the safe place. I think you have to feel and test it a little bit before you’re willing to let it stretch.
The realization of the situation had changed wasn’t an overnight thing from what I hear. It took time to figure that out.
Yeah, it took time to figure that out. Counseling throughout this whole thing was something that I pulled my kids, my family and myself throughout this deal and I’m so thankful for that. I think what I realized about myself as it was the only time that I would allow myself to face feeling upset, which it sounds so weird but I defaulted to anger. If I felt sad or something, that was a threat. Feeling those sad feelings was a huge threat because it can propel me. If I got overwhelmed, I got to keep going. It was my fuel. It wasn’t like I was out wordily angry but that’s what I talked about. Counseling quite a bit was like, “I feel so upset about this. I’m mad about this.” That was my train of thought.
Am I hearing that the anger was a natural byproduct but was it angry about the situation you were going through or anger in general at anything that came up? It’s almost like a go-to emotion.
That’s exactly how I put it in my book. It was my go-to emotion. That’s why I’m talking about counseling. I’m so thankful that I was able to explore those feelings and understand them maybe. My counselor had helped me to see that this is a normal thing to feel when in a trauma situation. You might want to think about it or, at some point, you might feel differently. I appreciated knowing that. I’m not crazy. I’m in a realm of a typical. I don’t know why that comforted me. I was in control then again. I also got the opportunity with my children to have them go through. I loved that.
I let them. I learned about them, how they deal with stress, how I think, what they love and what they were worried about. It was this other bizarre byproduct that was helpful. When we got the heads up that homecoming can be tough, we started marital counseling right away. It was like preventative marital counseling, which was still control. There’s something to that. I love counseling so much. I think it’s a wonderful way to explore.
One of my majors is Psychology so I like people and how we think. I was thankful for that. As we tried to work out some of the ways in which we were coming together and, at times, missing each other, that created an opportunity to talk about things that are hard. I came to the realization that I didn’t want to be the caregiver anymore. We’re in COVID so I’m listening to kids fighting upstairs or whatever and because he can’t feel his feet, he has neuropathy and was still not strong, I’m also listening for an adult human to be falling on the ground. I’m constantly listening.
We were able to walk through stuff like, “I don’t want to be the caregiver anymore,” but he didn’t want to be cared for anymore either. I don’t want to be the patient. These things are things you’d never expect before going into it. I’m thinking of that cliched thing of what’s revealed can be healed. That’s been my approach to it. If I sit on it, I probably won’t be the best I can be by not dealing with it. I’m sure there are a million other things I’m going to deal with from it. Let’s reveal on and we’ll figure it out. I’ve learned a lot through it. That’s something.
I’m blown away. It’s amazing to know the transition in your journey that you’ve gone through so far. This was a few years ago because he came home in November 2019. His name is Chris. How is he doing now?
It’s so bizarre. He is doing amazing. He was in three different health care facilities in his recovery. One in South Dakota and two in Nebraska. This summer is what he’s calling his victory lap. In May 2021, he ran his first half marathon. He’s now training for his first Olympic blank triathlon. He’s like, “It doesn’t hurt as bad as it used to because I can’t feel my feet as well.” That’s a positive way of looking at it.
Did he run before?
He’s a college basketball player. He’s a guy who certainly didn’t like to run but is not outside of training and discipline-minded physical stuff. His physical and occupational therapy turned into like, “What can you do now to keep yourself in shape or to build strength?” He’s started acupuncture and he was amazed by the appropriate section in his ankle. He could tell that there was something. It’s now about for him, his life, his body, how is he going to create strength or does he want to and he does.
This training stuff has been the way he remains committed to doing it because life can take us all over and away from working out if we want to. That’s his therapy but he’s doing amazing. In our conversations, he wouldn’t mind that I’m saying this but he’s also coming to a place where he’s able to put down some of that. I don’t know about positivity. He’s a positive person but I think he’s starting to realize that’s a knee-jerk reaction. That’s a defense too.
I was thinking that what was your go-to emotion is anger. He sounds like it’s like over happiness.
Not in an odd way but he shuts down. He’s like, “It’ll be good.” He’s very believable and does believe that. It’s his top strength and that strengths finder is personality stuff. I think he related to that joy and suffering thing. There’s a point where you start to feel a little bit in your safe space and that defense of not maybe even allowing other people to talk about the less positive side of things doesn’t cultivate a relationship. I can see it all the time when the kids are upset and he’s like, “It’s fine. You’re good. Done.”
That’s a way of creating distance too.
It unintentionally creates distance. It’s been a journey of so many different kinds but I’m thankful for where we’re at now because there is more emotion that we’re able to now, like, “These things are hitting us. I think it’s an echo.” A lot of people can probably relate to trauma as an echo but physically, even what your body will allow yourself to do. It wasn’t that long ago, something wonderful that helped with our healing reconnection. I don’t know if you’re familiar with CaringBridge.
What is it?
You know from our conversation that I’m a relatively private person. I don’t need to talk about stuff that’s going on with me. I have a smaller group of friends. When he got sick, I didn’t want anybody to have to know about what we were going through. When someone disappears from their lives, in our small community, it’s big news. I’m getting texts all over like, “How’s he doing? What’s going on?” It was very overwhelming.
In those situations, it’s like, “I don’t know how he’s doing. If you want me to tell you, I can tell you really bad. He might die and I don’t have time to text you that.” CaringBridge is basically a public blog site and nonprofit that allows you to tell your health stories. It conveys it to larger groups of people. It’s like a blog. I didn’t want to do it but I realized though it had to be done. My parents were caring for our children, we’re in a small community, everybody needs to know he’d got clients, I got my life, work and friends so I started writing these little updates maybe once every couple of weeks. What they became to me was this exploration of wholeness.
For me, I was literally cataloging what was going on but I also was exploring with perspective things I was learning. You never think you’re going to be in that spot and yet I can look at these things as points of light. Someday I’m going to look forward to talking to Chris over coffee about this and whatever and it went much deeper but it was very healing for me. What ended up coming out of that is when Chris came home, I had to keep writing. I allowed a ton of people into my life that way. It was comforting because there were many people that were on those sidelines paying attention. That’s what ended up becoming how I faced out.
In my book, I use those CaringBridge as my face out and then I talk about that background of what’s going on. It was quite the journey but it was helpful to share that writing journey and that experience of ours with the kids and Chris because he wasn’t home for that year. It was a way for us to talk through those experiences and have some more perspective on what it was like from the caregiver’s perspective.
As a caregiver too because the word you used was bizarre and it was attached to him doing amazing.
Everything about this is bizarre. You wouldn’t expect any of the things that have happened or his recovery with what you see. I’ll say this though, I wrote it for my own feeling. I wanted to capture the book and capture the perspective of resilience that I feel like we put into it the best that we could for the kids because everybody has their story. Everybody has their situation where they’re called to resilience because it’s not good. I wanted them to be able to examine this story someday from an adult perspective. What made me feel was this byproduct of, “I wrote this book and I’ll share it. If it helps, great. If it doesn’t, that’s not my business,” whatever.
I got this amazing opportunity to realize that my book had traveled around to the point where there’s a family in Colorado that is going through what we’re going through now. It floors me that they’re in this situation right now. There wasn’t a perspective like my book that I leaned on. They’ve talked about how appreciative they were able to walk through this with more of a positive outlook and stuff. That’s sharing your story. I didn’t do it for other Guillain-Barré patients and caregivers but when you share your story authentically and with utmost vulnerability, you realize like, “That potentially changed some part of theirs.” That’s fulfilling.
When you have that moment where you’re saying that I can help a lot of others because of what I’ve gone through.
I hope it helps but it’s an offering. That’s all I can save on it.
There’s a phrase you have, “Wading to the other side of grief.” What do you mean by that?
We all go through those grief periods and it goes to where you started. You deal in the moments that you have to deal with. There’s that period of time where you’re tired and you don’t want those feelings. You don’t want that experience and try to forget it or do whatever you can. I think that’s pretty normal. I call it thorns. You tried to find ways not to bump the thorns in your side because they’re sitting there. If you bump them the wrong way, it hurts again. You modify your behavior so that you don’t bump the thorn. I think the thing is the thorn will stay there until you find a way to deal with it.
From my perspective, there’s no way but through. There’s that idea of like, “You have to wade through it. You have to go through those steps.” We are called to do that and there’s no human that isn’t going to at some point. I think that we can maybe express ourselves more fully in going through it then continuing to avoid the pain because somehow we’re supposed to learn from what we’re doing. I don’t have a better explanation and no one does but somebody said once to me, “Life is for the refinement of your soul.” The things that come to you in your life or opportunities for you to refine. It’s easy for me to say because I’m on the other side of that horrible situation with an amazing recovery so I fully recognize that. I think that I’ll only be better if I continue to examine and continue to live my life at least with the perspective that they had to go through.
What is the taking inventory situation about? You referenced that towards the beginning.
You’re inventorying your behavior. Sometimes you have to look at yourself and the feelings of anger. You get to inventory your reaction. Is it defensiveness? We’ll use defensiveness as an example. My hunch is that’s one of those ways to avoid a thorn. You don’t want to aggravate a thorn and defensiveness is a way to protect yourself. There’s that opportunity then suddenly to go, “If I can look upon the situation and say, “What am I doing consistently? What’s my knee-jerk reaction? How do I want to do this to defend myself or whatever?” I don’t think sometimes we don’t even know the thorn isn’t there anymore.
Sometimes you’re like, “That’s how it is,” and maybe it is. At the same time, if it hurts it’s a call to go through again, it wades through to allow yourself to maybe readjust. Defensiveness isn’t called for. It’s pushing away someone else but you’re still working on that other thorn but you’re creating another one by potentially creating distance with somebody else in your experience. A lot of what we do sometimes is motivated by past stuff. If we don’t take inventory of what the past behaviors that we tend to go to, which ones are maybe tied to those things, maybe we’re still living in the present and not allowing the next things to happen.
It all sounds so easy when you say it but it’s not so easy when you’re doing it. Could I give you a three-step process to inventory? No but I do think that it’s about being conscientious of like, “That was a defensive thing that I did. I pulled on you as my husband and I talked about, ‘My positivity is sometimes maybe my shield.’” It’s that opportunity to look at it and yourself with non-judgment.
I appreciate you sharing your story. Normally, I’m super energetic, over the top and this has been emotionally connecting. I’m sure everyone reading is feeling the same way but where can we find your book?
Go to MollyWeisgram.com.
There’s so much we could unpack but this is a great start to tell people, “There’s a shift that can happen in your life.” You’re the spark. I love that. Thanks for being the spark.
- The Other Side of Us: A Memoir of Trauma, Truth and Transformation
- Molly Weisgram
- Guillain-Barré Syndrome
- Rick Jordan
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