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Relearning Life - Interview with Megan Johnson

Updated: Feb 14

Quote: So I remind people to please, please, as hard as they are - I've been through so many of them, and they're still there, that pain, that hurt - to let yourself feel, allow yourself to cry, and don't mask your emotions with substances because you're embarrassed that this is overwhelming.

Tina: Hi! My name is Tina.

Megan: Nice to meet you!

Tina: Have you done anything like this before? Or is this your first time?

Megan: This is my first time.

Tina: Nice, it's like a conversation and you're just sharing your story, anything you would like. So we can start by introducing yourself, your name, your age, and occupation. And then once you feel like you've got a pretty good background, you can get into your brain injury or anything else you would like to highlight!

Megan: All right. My name is Megan Johnson. And I am the mother of twin 20 year olds, and they are two boys. Their father passed away before they were born, so it's just me and them. After my twins’ dad died, then I unfortunately had my younger brother die, my dad die. And yeah, my twins call me The Angel of Death. Because unfortunately, my twins’ dad died from an asthma attack in our bed. So I woke up and found him and I was only 23 I think at that time, and I was always told I couldn't even have babies. So when I went to the doctor, I thought I was an ulcer. That's why I was throwing up after he died. And then they said baby A, so I'm like, hold on, what’s that baby word, and why is there an A after it!? They're like, well, here's baby B. And I'm like, take it off now, remove it, if there's a CD, I don't need to know. So you know, going through grief at 23 and finding out you're pregnant with totally unexpected babies, I only carried them to 29 weeks. So they weighed one pound 10 ounces and two pounds 10 ounces. They were as big as dollar bills; they were tiny, itty-bitty.

Tina: Wow, they are at least five weeks earlier, right?

Megan: No, 11 weeks early.

Tina: WOW.

Megan: Yeah, they were 11 weeks early. My little brother when they were born, grabbed a $1 Bill and put it up next to one of them. And that's as big as it was, like, wow, wow. So that kind of started the craziness of emotions of trying to figure out how to mother babies. So my little brother and I were best friends. His name was Adam, and he helped me dramatically. He was only two years younger than me so he stepped up and took that Uncle/dad role. During all this, which is back in the early 2000s (my twins were born in 2001), but my younger brother, unfortunately, got addicted to pills and accidentally overdosed and died. And so losing him was like losing another kid. You know? Because he was my best friend and my twins were only five when that happened. And I obviously, you know, had just lost their dad and then my brother. So I didn't handle the emotions very well. I wanted to numb myself, so I didn't, you know, feel this overwhelming grief and pain. When my twins were or 9, my dad at that time, he would go over to the Philippines and come back (he was a veteran) And thankfully he was back from the Philippines staying with us. And he passed away from sleep apnea on my couch. So I unfortunately woke up and found that too, and I'm like, okay, [signs], okay.

So I accidentally became an addict to numb my emotions. And I just didn't want to feel that pain and I wanted to be a mother. I got addicted to pain pills, like Vicodin, Oxycontin, and all that fun stuff. And then I tried to get off all those. So I went to this methadone clinic here in Iowa, and it's supposed to help you get off. It made it worse, it was easier, cheaper, you know, so, and I drank liquor on top of it, which they obviously do not recommend. Yeah, my kids would tell me, they're like, “Mom, you didn't eat your You didn't eat.” So, I'd been going to the doctor because I kept passing out and kept doing all this. The Doctors kept just giving me a lot of vitamin B, but my body was already too depleted that one day, I couldn't walk, my eyes crossed, and I totally forgot everything. I went into the hospital, thankfully, and they admitted me and told me I have this rare brain injury called Wernicke-Korsakoff syndrome. And they're like, only 20% of people will relearn life: relearn how to walk and will live on their own again. My twins had to go live with my mom. They were 15 or 14 or 15 at this time. So they had to move schools and move states to go home in Nebraska. And they just thought I was going to be in a home the rest of my life because all the doctors were like, this isn't…people recover, you know, this isn't. So I went to a rehab in Carbondale, Illinois called NeuroRestorative. I was there probably about six to seven months. And then, I got back here to Iowa because of insurance funding.

So I came back to Iowa, I finished my rehabilitation here and somehow relearned how to walk. I still can't feel my hands. My neuropathy is still in deep sleep, from my fingers to my elbows. But you know, I relearned how to walk, and.. I learned that I'm not going to remember. So I use my iPhone as my backup brain. I know I'm going to forget things. My twins were not patient, obviously at 15. I totally understood again, you know their main phrase would be, You already said that mom or you've already told us that. So yes. moving back in together they wanted to finish high school with you know, the people they grew up with, they didn't want to be in Omaha, Nebraska with people they don't know. And luckily, enough to where we were able to all live together again, and they got to finish school with their buddies. But it’s still a learning thing every day of - Did I just say that? What did I just do? I still use my Apple phone and my Apple watch - my Apple Watch is my to find my phone.

Tina: Hahaha, I love that.

Megan: It is the backup to my backup brain. And yeah, that's kind of the gist of me.

Tina: That's an excellent summary packed with a lot… Is there any part that you personally would like to get more into? Because personally, I'm curious about two things. The first part is the rehab part. Being alone, basically at a rehab center, what was it like? And the second is how you use your phone as a backup.

Megan: So being in Carbondale, Illinois, my family was in Omaha, Nebraska, so I was completely isolated. And when you first go to NeuroRestorative, in Carbondale, they have sectors. So, like this lockdown, you know, the place where you first get it. And it's so nerve wracking to go there, know, no one and to be in this room, eat dinner in this main area with all these other people that have brain injuries. And it is just scary to see, because you at least remember that part of it, but when you see the extent of how severe brain injuries can be is overwhelming. And to hear how long some of them have been in those! I mean, thankfully, you know, they have like physical therapy, the OT, the speech therapy, and so every day, and then you'd have like recreation, and they tried, you know, the workers there were wonderful, wonderful! they were all so nice in as much as a strict schedule you're supposed to be on, you know, at least they let you feel like you were a five year old child.

Tina: Yeah, that's the worst! Some rehab centers are just not acceptable. not professional.

Megan: Yeah. NeuroRestorative was just wonderful with me. And they still will send me emails, you know, just checking in on me and making sure. So they were absolutely fantastic. But yeah, going back, I was living in this, kinda like a little dorm: have to hear people walk down the hallway to get to the bathroom, you have to schedule showers and not feel like a grown person. Just feeling so helpless. And so it really motivates you to try to relearn everything you can about life, and hope that your brain retains it. And they were really big on journaling, you know, and trying to get at least that I'd write down what I did every day. So then I could, when I wake up in the morning, not have no idea what I did yesterday, and can at least read what I wrote the night before. My twins had my writing when it all first happened. You can’t even read my handwriting, it was like chicken scratches. And when they showed me that, I'm like, Whoa, because I don't remember that intensity of the injury. I don't remember myself going into rehab. I don't remember the first hospital stay and you know, none of that. That's all wiped out. You know? Yeah, even honestly, the last two years before my brain injury, those memories still haven't returned. So it just shows how your brain brings some memories, but other ones are clear as day. It's like, How are you so picky? [chuckles] There's many I would like to get rid of so let me know, I would give you a list! I would like to not remember, you know, finding people dead. And I would like to remember what my kids just told me, You know what I mean? It’s so weird how your brain balances memories. But you know, so I went there until the insurance ran out. And then there's a place here in Iowa called Community Neuro Restorative and it was more like a house. It wasn't like Carbondale, having three levels of, you start in this in patient, and you kind of go to another level to where there's more, then you then you go to a townhome to where you guys can cook, there are still helpers to make sure you're not burning the kitchen down. But you're more independent, you're actually in a house or duplex, you know, in the bedroom. And so, once you get to that stage of that, you kind of graduate. And then I went to this place in Iowa. And it was just in a house too. And it was giving me more setup for living back in Iowa, finding the neurologist, and the psychiatrist, and the doctors here, for if I am able to live on my own or with my twins, what care is going to be to make sure that I can actually get up on time and do that. They obviously weren't old enough. So yeah, so after that, they moved off to college. And then one of them came back, and I live with one now and the other one is Mr. Independent on his own. Yeah, but, you know, the brain injury thing, I still just use my phone a lot, the notes in my phone. If someone just told me something, I need to remember it. Thankfully, thankfully, thankfully, my brain remembers that I'm going to forget, [chuckles]. When I'm told stuff, I'll grab my notes. Luckily on the iPhone, your notes will have the date and the time that you typed the note. Then when I'm going through my notes every Sunday, I try to go through my notes on my phone. And I also use my calendar for what time I need to be at work because the Apple calendar notifies me through my Apple Watch. You know, because at work, I have no clocks, so I have no idea what time to do anything. So my watch reminds me like, hey, you're leaving in a half hour, so get your stuff finished up. Because dealing with the government and disability and working is so joyously fun.

Tina: Yeah, I've heard so many stories.

Megan: Yeah, they cut me off in November, saying I was no longer brain injured. I'm like, Oh, I’m healed. Awesome. What, how? Because I was able to work five hours instead of four a day. And I'm like, but everything has inflated. Everything. I have to pay money for everything. So I had to work more to provide for myself. But you did what?

Tina: Brain injury might never heal.

Megan: Yeah so I went to my doctor. When I got cut off in October, I called my family doctor and went to my neurologist, all that and they said this thing is permanent, permanent. This is not healable. So finally I got back in payment status in February… But now there's all the back money that they overpaid me from when I was working. It's been so not stressful! [sarcastic]

The first thing I did was reach out to my rehab guy here in Des Moines, the owner of the rehabilitation, like hey “Do you happen to know anyone that knows the right wording when I'm doing the paperwork?” Because I have no idea how to fight the government. So they sent me to a lady and one of her workers here in Iowa has been dramatically helping me.

It was just insane, I would love to be healed. I would love to be able to do a job. But they created a job for me. When I started training for Panera Bread, I'm like, I don't think my beautiful broken brain can handle all those buttons and screens. So they created a job for me that I just go and prepare food and cut all the veggies. And I guess if you're on social security in a job, it creates a job for you. Therefore this is the back money that the government owes them.

Tina: So you're still in the process?

Megan: Oh, yeah. I just got an email yesterday about how they haven't made a decision.

Tina: I really wish you best of luck on that. The Brain Injury community has been so underserved, just because most people look completely normal.

Megan: Or people tend to just assume that you get back to 100%.

Tina: Yeah, it's really infuriating.

Megan: Yeah, so frustrating. I had to write letters saying even when I go to a grocery store - I have handicapped parking, they're mostly full - and If I'm not at a store that has row numbers, I would walk around constantly, hitting my lock, for the sound on my car alarm to find where I parked. My memory is really short, I can walk into a store and back out and logistically have no idea where I parked the car.

I can't just live a normal life. I'm not 100%. Yes, I can go and do good work, I can go do some work, but my body is tired. I am different. I do require more time than a normal, non brain injured person. And it's fun. And the government is so joyous and awesome to deal with them. [chuckles] I have never reached out to like senators and governors. I mean, that's just not any of my existence at all, you know, I roll with the flow, I try to stay under the radar. And therefore I wonder if they're doing this to someone who has worse memories. They don't even know if they opened that mail and read that paper, and I’ve told the government that you cannot mail us the same paper, like three different times. And ask the same thing when we've already mailed that back in. Because it gets us confused as anxiety is now a new existence, which I never had before, but now I get anxious and it's just pfff…

Tina: Yeah, I just feel like these interviews just fly by for me. And the last question to wrap it up is what advice would you give to other people as someone who has been through so much? What would you want other people to know, like, not only people with brain injury, but also anybody else?

Megan: I work around youths a lot and other beautiful people. I turned 45 next week, my twins are almost twenty, I'm old and ancient, and all this.

Tina: No! You got a long life ahead of you!

Megan: Yeah since I've been through so many, so many traumatic events in you know, I tell a lot of the girls and everyone at work that's going through stress: allow yourself to feel this, do not mask your emotions with substance because the only thing you're doing is creating more and more and more levels to your anxiety. And your health is declining every single time you don't want to feel. So I remind people to please, please, as hard as they are, and I've been through so many of them, and they're still there, that pain, that hurt, to let yourself feel, allow yourself to cry, don't mask your emotions with substances because you're embarrassed that this is overwhelming.

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