Table of contents:
1:32 How it feels to have TBI
4:00 The effect of TBI on our relationships
6:13 Symptoms impacting your social life
7:47 Wendy’s TBI story
9:10 The power of forgiveness
14:06 Being hard on yourself during recovery
15:17 Wendy’s bumpy road to recovery
21:19 TBI and PTSD: a difficult combination
22:41 Doctors’ words limited Wendy’s recovery
26:34 Wendy’s current state of PTSD and TBI
Concussion Stories Podcast
With the player above, you can listen to the Concussion Stories interview with Wendy Smeets. We discuss not only her concussion and how she experienced having one, but also loneliness, PTSD and being hard on yourself during recovery.
Moreover, we dive into coming back from trauma, healing, forgiveness and recovering from TBI. What follows is a transcript of this podcast episode.
Introduction to Concussion Stories
[Melanie] Welcome to Concussion Stories: a Lifeyana podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery.
I’m Melanie and I spent more than six years experimenting, training, and learning to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before.
In Concussion Stories, we dig deep while discussing hopeful stories of recovery as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks.
Down in the description of each episode, you can find a table of contents in case you want to skip ahead.
Let’s dive right in.
For this episode, my friend Wendy and I sat down, dove right in, cut through all the red tape and discussed feelings of loss and isolation, not finding help in a medical system, and the difficult combination of a concussion with PTSD.
Also, we discussed forgiveness and hope and opening up to life again. Just to clarify before we start, in this episode, we talk a lot about TBI. This means traumatic brain injury. A concussion officially is a form of mild TBI. I just wanted to explain it to you in case you didn’t know already.
Let’s get started with this episode. This is Wendy Smeets.
How it feels to have TBI
[1:32 Melanie] I guess my first question for you is we both started by trying to make a career for ourselves and then both of us sustained TBI. I was wondering how this has been for you?
[1:40 Wendy] In the beginning it was very hard because I couldn’t rely on my brain anymore. I was studying a lot and I did in a lot of things. And I was focused on my career. So, I was always in my mind and my brain was everything.
The first nine months, I was laying in bed. I had like two hours; I could do something but also not a lot. And I was tired the whole time and didn’t know what was happening.
Nowadays, when I look back on it,the TBI helped me to come out of my brain into my body. I’m thankful for that.
[2:20 Melanie] Yeah…While it’s happening, it feels like you’re losing not only everything that has been your life, but also maybe yourself.
[2:28 Wendy] Yeah. When you rely so much on your brain and your whole life goes around it. That is who you are: you are your brain. And when your brain doesn’t work anymore, as it did in the past, you lose your identity too, that’s a hard thing.
In the past few years, everything I was doing, totally changed. Because I could do so much. I had so much energy. I did two masters and worked at the same time. And in the beginning, when I got my TBI, I didn’t want to accept it. I even didn’t want to recognize that I had it.
So, I was trying to go further the way I was used to, but that didn’t went well because then you’ll get tired and get those headache attacks. And I was always making excuses for that.
So, oh no, that’s not because of the TBI it’s because I’m sick or because this because that. I always was covering it, camouflage it, and didn’t want to know that I had a TBI and that my life changed so much.
And when you get something like that, and so sudden. The day after you wake up and your life has changed. It’s totally something different. And you will need to learn to live with that.
The effect of TBI on relationships
[4:00 Melanie] Yeah, aside from all the symptoms, you also have to deal with the changes in your life and how you’re not able to keep the life that you just had the day before even.
One thing that I hear a lot from people with a concussion or other TBI is that their relationships are affected a lot especially because TBI is often so invisible to others.
From the outside world like we were before, but on the inside, a lot is changing and our entire lives,all aspects of life, are impacted. How is this for you?
[4:38 Wendy] It’s so hard for people to understand what you are going trough with TBI. What you said: you look normal from the outside,even healthy, nobody sees something. But a lot is going on.
So even to this day, and I have TBI foralmost five years, it’s very hard especially for my mother to take into account things I am going through. Especially with your energy that you when you do something with friends or family, you have those limits. It’s also hard for me. And I have it. It’s something very difficult.
[5:45 Melanie] Is it like they don’t physically sustain TBI while you’re sustaining it, but maybe they’re experiencing a sense of loss like us, too?
[5:53 Wendy] Yeah. Because you change as a person. So, there is a loss. But also there came back something new through it. And I think that’s the beauty in it, because you lose something, but also your gain and win something.
Symptoms impacting your social life
[6:13 Melanie] You’ve been through so much hard stuff. And still, you point toward the good stuff as well. And I think that’s the path to joy and fulfillment in life.
Were there any symptoms that were inhibiting your social interactions? So, in this way, influencing your life?
[6:31 Wendy] Yeah, absolutely. In the beginning, it was hard for me to process all the sounds around me. Because doctors told me, that when you have TBI, a lot of times you don’t have the filter in your head anymore, that you can zoom in on a conversation and filter out the rest of the surrounding sounds.
At the start, for example, my grandmother had a birthday. And I was there for three hours. But you had a lot of noises of people in the background. So, I had to stay in bed for a week or something like that, afterward. I was so tired to recover from it. Everything’s coming into your head so hard.
[7:26 Melanie] And it’s too overwhelming. It can physically hurt to hear something.
[7:29 Wendy] Yeah. Going out to a cafe or something and just be in a conversation with somebody- it’s not nice. Because of all those sounds and I sometimes even I can hear better another conversation than mine. It’s crazy.
Wendy’s TBI Story
[7:47 Melanie] Or you can hear the kitchen and not even hear your own conversation. Could you tell us some more about: where did your TBI come from?
[8:00Wendy] Yeah, I can tell something about that. Five years ago, in 2014 and 2015, I had a very toxic relationship with a guy who physically abused me and mentally. And I had a lot of concussions from it and at the end of the relationship I got seizure from the violence. So, it’s not a pretty story. But yeah, that’s how I got my TBI.
[8:43 Melanie] I think a lot of people think about concussions related to sports and to accidents like mine, but we forget that a lot of them could also come from these kinds of situations.
It’s not an easy story at all, like you say. But you got out of it. And you’re so strong, even though you’re still experiencing these symptoms. Maybe even stronger than you’ve ever been in that sense.
[9:09 Wendy] That’s true. Yeah. Thank you.
The power of forgiveness
[9:10 Wendy] I think it’s very important when you go through something like that, you can forgive yourself and the person will do such a horrible thing. Not only when you are abused, but also all the things in life. I think forgiveness is very important because it gives you space.
In the beginning, I was very mad with this person. And at the very beginning, I didn’t even know what was going on. I was so confused. But when everything came down a little bit and I realized what was going on, I was so mad and angry.
Everytime when I got a headache, I was like, oh my god, I was so angry. And then I started to do yoga, meditation, and breathing exercises, and it changed the way I look at life. And those things helped me to forgive, to forgive this person.
Because he is also a person on his way. Ignorant, addicted to drugs, not knowing what he is doing, or maybe in a sense, he knows what he is doing.
But yeah, I can forgive him. And I can forgive myself. And I think it’s also important, I can forgive myself for being in that situation for so long. And not stepping out of it. It gives so much space to forgive. It’s not easy.
[11:11 Melanie] It’s not easy at all. But in the end, I learned also that forgiveness really is about releasing yourself, instead of so much as releasing the other person. Freeing yourself to be able to live on.
I think it’s Archbishop Desmond Tutu, and his daughter Mpho Tutu, who wrote this book, The Book of Forgiveness, and they say this way. And maybe people are listening to this now and think, how should I forgive? Especially when you’re still feeling all the emotions of anger and destruction even?
[11:30Wendy] It’s a process. It’s not like, oh, I’m going to forgive him now, it’s a process. And I think you don’t have to repress the feelings of anger. Just allow them to be there.
Even embrace them. Because they have a right to be there. When you are going through that, in the end, you can forgive, it’s beautiful.
In the same way, it’s very hard. And it’s something you have to feel in your whole body. It’s not something you think about I’m going to do this now. Embrace everything. I was not always thinking like that.
[12:19 Melanie] Yeah, everything you’re saying is now you having moved through the process. And not IN the process.
[12:25 Wendy] Yeah, I cursed the TBI, I hated it. I was so much in a fight with it. It was like my enemy, and I was hiding it and repressing it. But when you’re going to accept it, I think that’s the key: to accept that you have TBI. And that you give it space to be there. And, in a sense, become friends with it and see the things it wants to tell you.
In my case, it was like: you are so much in the mind. Listen to your body, you have this whole vehicle where your mind is in.
[13:06 Melanie] You also talk about forgiving yourself. This has been a big thing for me as well, because as you know, I’ve been in an accident, which I caused myself, so there was no one else involved.
And after years of really suppressing like you, all the guilt I felt for wrecking my life, and also causing harm to the ones I love, because their relationships with me changed, and well, it didn’t become the better for it, initially, it made me want to control all facets of my life so that no accident would ever happen again.
So, I got anxiety disorder, because of it. Until I realized that was the problem. I was living in this loop of anxiety. And I already knew how to forgive others, so I tried it on myself.
And that was the key. But forgiving yourself can sometimes be the hardest thing. For sure. And I think also in the whole recovery process, it’s hard to be kind to yourself.
Being hard on yourself during recovery
[14:06 Wendy] Yeah, I was always very hard on myself, putting the standards high. Even before the TBI I was very much controlling my life. And nowadays, I realized that something out of fear that you don’t trust yourself but also don’t trust life.
So, when you can let that go and can let the control go, this whole space opens up for you. Life becomes beautiful when you trust it.
[14:46 Melanie] And it can surprise you and give you an even better life than you expected.
[14:56 Wendy] Yeah, for sure. Because you can’t control life. And for me, before the TBI, I think a lot of people especially and in the Netherlands are doing this: I was controlling my life a lot. I was planning everything. So, the beauty of life couldn’t happen, because…
[Melanie] There was no room in your schedule!
[Wendy] No! You cannot control of life; you can maybe keep it up for some time. But you cannot do it all the time. And for me, the TBI helped me a lot to loosen up the control, to let go of control.
Wendy’s bumpy road to recovery
[15:17 Melanie] I was wondering, we both have lived through it. And I’ve completely recovered, and you’ve come a long way already.
Can you tell me something about the difference between how you felt initially and where you’re at now?
[15:35 Wendy Smeets] That’s a big question. In 2014, I was still in this relationship with this guy. In 2015. I got my seizure. And after that, it was totally chaotic. I was confused. I didn’t realize what happened to me. I didn’t see how hard the situation was.
My dad took care of me. The first nine months, I was almost only in bed. I was trying to still make a great career as a lawyer.
When I got this seizure, I worked for like four weeks at a law firm. And I was very enthusiastic and excited about it. And I thought this is how I going to make my career. And this is what I wanted to do.
And nowadays, I realized that that was something, what was expected for me, it was not what I truly wanted to do. But at that time, I totally needed to go on with this. Whatever it takes.
So I got my seizure, the first few months, I didn’t go to work, I think. And then I tried to start working again, like one or two days, a week, sometimes from home, and sometimes in Amsterdam at a law firm.
And the rest of the week, I was only in bed. I was very hard on myself, and then even tell my boss and my colleagues what was happening, because I was so focused on getting this job.
And I was scared, that it was a sign of weakness when I told them what happened, so I didn’t tell them. I wanted to go further as a lawyer.
But after a few months, the contract was finished. And they were also finished with me. And now I see that is for the better. And then I still was the rest of the timeon bed and at a very slow rate, I was doing more stuff.
I remember that every night I had to sleep at like eight o’clock and when my nine months bed rest were over, I was very, very tired all the time. And I got in a rehabilitation clinic. And I remember when I first was on the waiting list.
At the same time, I also have PTSD because of the things that happened to me. So, and I was on that waiting list too. And I remember that I called the rehabilitation clinic.
I called them, and I asked them, can I also do the rehab on the weekends, because on the weekdays, I want to work, I want to make a career as a lawyer.
So, I called them and they were like laughing because it was so unrealistic. I’ve got a habit of thinking that I can do more than I actually can because I was denying the TBI so much.
That was how it started and then I got the rehab and also the PTSD treatment. It was a horrible time actually, because I was discovering slowly what happened to me. And that I couldn’t do not that much as I was used to.
My memory changed drastically. Also, the things I could do.
In the beginning, it was hard for me to find the right words. I also have a hard time right now with English, even in Dutch. I had a hard time finding the right words, it was hard for me to have a conversation with people.
I did this yeah, silly things. Like I lost, my phone a lot of times and found it back in the fridge. Like, crazy places.
Finding my spoon and other things like a knife into my closet. I put a baret to put in the oven, I put it in the dryer, things like that.
So, it made me very insecure about myself and the things I can do.
TBI and PTSD: a difficult combination
[21:19 Wendy] And thereby I had PTSD. So, I was very anxious, so anxious that I couldn’t even talk to people. I was shivering to talk with people.
PTSD and TBI together, it’s like such a hard combination because TBI is asking a lot of rest for recovery, and PTSD doesn’t give you that rest.
Because of PTSD, you’re always in a fightflight mode. So, you are always stressed and cannot find rest.
And sleeping with TBI was hard for me. Because when I went to bed at night, everything in my brain, it suddenly went like ping pong.
Yeah, like every impression you had at the day was like, flickering through my mind. And at the same time, because of the PTSD, sleeping was very scary for me because I had all those nightmares.
And I was always aware I was always on high alert. So, it was hard for me to get rest. So that made recovery very hard.
Doctors’ words limited wendy’s recovery
[22:41 Wendy] The doctors told me this is as much you can recover these two years and you cannot recover anymore. This is the situation you have to deal with, you have to cope with the rest of your life.
Also, for my headaches, I had these crazy headache attacks. They are called cluster headaches. I got prescription painkillers, Tramadol it was called, and MRI scans.
And after all that, the doctor told me. Yeah, we cannot do anything more for you. This is the thing you have to live with. The only thing I can do for you is subscribed painkillers like Tramadol for you.
And then another doctor says, my psychiatrist, he said No, you cannot take this painkiller. It’s very bad for you. You have to do this one. So, I got a whole list of painkillers.
The doctors were telling me: this is your end station. You have to live with this. This is how your life is going to be.
I think the whole health system is so much from the mind. It’s working with almost a checklist. I experienced that with my neurological research.
How I experienced it, it just is forgetting about the person. It’s just we do this, check. We do this, check. Yeah, it’s a lot of protocols. Yeah, they only were able to give me prescription drugs with these side effects and this numbing out of life. And a treatment based on fear.
[24:41 Melanie] What the system has to offer you or what doctors tell you,
it’s not always the truth. It’s just one of the pieces of the puzzle. And you have to make it work for you.
[24:49 Wendy] Yeah. It can even be very limiting what doctors tell you. And they do it from a good intention, of course. Yeah. And from what they know. But can be very, limiting when a doctor says to you, we can not do anything more for you.
This is how you have to live. And in the end, you discover that this is not true. But I think a lot of people when a doctor is telling this, it’s limiting them. They got a limiting belief from it.
[25:25 Melanie] I think it cost me about two years in my recovery process. I could have recovered about two years earlier. And it’s without any accusation that I say this, but it’s just the fact that one doctor told me.
I went to check with another, I went to check with another, and all of them said: okay, brain damage after two years, it will not recover.
This is it. The same message that you got. And I gave up. And it really took me two years to get back on my feet.
Because in the end, I realized I have a choice. Either this is it. I know where this is heading. Or I do something about it. And I don’t believe the doctors. That was the choice that ultimately led me to the recovery.
[26:06 Wendy] Yeah. And you did it. But for a lot of people, they are not able to do that. They are not able to see even that they have this choice.
[26:29 Melanie] Well, it’s really hard to get to the place where you say: okay, I reject the system in a way.
Wendy’s current state of PTSD and TBI
[26:34 Melanie] What about now? How do you see yourself on the road to recovery?
[26:31 Wendy] My TBI and my PTSD are not limiting me anymore. I don’t think I have PTSD anymore. And TBI, I have some symptoms still, but that’s okay. It’s helping me a lot to stay connected with my body and to feel.
[26:50 Melanie] So instead of it, is something inhibiting you, is something that’s warning you like you now have to stop doing this.
[26:58 Wendy] Also, I was used to going over my limits. Always. And with this TBI, it’s calling me back sometimes. You have to experience silence for a moment, it’s telling me. It’s just helping me to be closer to myself.
[27:17 Melanie] And I think that because you’re making this transformation, the relationships we talked about are also transforming because they are noticing this difference as well.
[27:26 Wendy] Yeah, it helps me open up also to other people. And I get that back in my relationships and the connection I’m making with other people.
[27:35 Melanie] Yeah. And that’s the silver lining of your stories and it’s in mine. Something like TBI and trauma can really help you realize that in life, it’s never stable, calm. There are always ups and downs.
It’s a question of, can you navigate the downs while still also keeping your eyes on the good?
[27:54 Wendy] Yeah, to experience to its fullest. Yeah, with the good and the bad, without the bad there isn’t the good, without the… You know it.
So, yeah, to embrace it fully, as it comes. And yeah, what I’m trying to do every day is to let life unfold instead of trying to control it.
[28:18 Melanie] Now I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away?
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Thank you for listening to this concussion stories episode by Lifeyana. May you be well and may you be happy.