Episode 21: The Journey from Tragedy to Advocacy

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Voice-over: Welcome to Spotlight on Migraine, a podcast series hosted by the Association of Migraine Disorders. Through personal stories and interviews with experts, we expose the true scope of migraine by exploring symptoms, treatments, research topics, and more. This episode is brought to you in part by our generous sponsors Amgen, Novartis, Alder BioPharmaceuticals, and Teva Pharmaceuticals.

In this episode, we speak with Lynn Julian, a musician, actress, marathon runner, and advocate. Lynn shares her lifelong journey living with an invisible illness, from concussions and chronic pain in her early life to traumatic brain injury after the devastating 2013 Boston Marathon bombing. Despite her injuries, perseverance, hard work, and proper diagnosis have led her to advocacy and a purpose through the pain.

Since 2015, Amgen and Novartis have been working together to develop pioneering therapies in Alzheimer’s disease and migraine. Together, Amgen and Novartis share in a mission to fight migraine and the stereotypes and misconceptions surrounding this debilitating disease.

Alicia Torborg: Today we’re with Lynn Julian, an actress, musician, marathon runner, and advocate. Thanks for joining us today, Lynn.

Lynn Julian: Thank you. That was a wonderful introduction. I think I’m most passionate right now about the advocate part.

Alicia: No, that’s great. Tell me about earlier on in your life how you were impacted with migraine.

Lynn: I don’t remember when it started — somewhere pre-tween, pre-teen, or teenager — and it was so rare. It might happen over Christmas break, when the family got stressed out, like every family does, and I would just start getting sick to my stomach, be unable to eat, and feel like there’s a stake being driven through your head. And as a child, I don’t feel like anyone ever believed me how bad it was, and that is nothing against my parents, because the word “migraine” never came up. So how can my poor parents know that this is a serious problem if no doctor is diagnosing me and letting them know how to help me?

Alicia: In 2006, you had your first brain injury. Tell us about that.

Lynn: I had my first serious head injury in a stage accident in 2006, when I was performing at a very famous club in Boston. And even though I lost consciousness for a minute — I had all the signs of a head injury. I was hearing under water, loud tinnitus, very, very nauseous, mood swings, extreme fatigue, and extreme band headache.

I went to the ER. They told me I was lucky because I had not broken any bones, like that was the worst thing that they could think of that would happen when you fell. So they sent me home. They said, “You’re going to feel like a truck hit you. You took a hard fall. You lost consciousness, but you’re going to be fine in six to eight weeks.” 

And I waited and waited for this magic date and felt worse and worse and worse. But I thought magically when the six week to eight week came, I would be cured, because these were people in white coats with serious letters after their name, and they told me so. And it didn’t happen.

Alicia: And so what did this do to you cognitively?

Lynn: I had a lot of short-term memory problems. I was walking funny, talking funny.

Alicia: You had said also that you had a hard time recognizing the songs you had written and reading your own music and playing the —

Lynn: People, doctors, just didn’t understand why I wasn’t doing it anymore. I used to play guitar every day. I would sing every day. I wrote songs. This is what I did. This was my joy. I could remember G, C, and D, very basic beginner chords, but that was it, and I have a degree in jazz. And it just — it didn’t make — it just made me so upset that I just didn’t want to deal with the guitar because it hurt to think all that is gone and I couldn’t even recognize my own music.

Alicia: Has any of that come back?

Lynn: I haven’t tried. I mean, I hear my own songs and I recognize them, but I haven’t tried to play them. I know that nothing — every time I try, nothing comes to me. I just don’t remember.

Alicia: Wow.

Lynn: I would have to start from scratch, and I guess I’m not willing to start back from scratch to relearn music. It just felt like — your personality changes with head injury, and I don’t think people — that’s not something that I see listed under the symptoms. They list the nausea and the light sensitivity and sound sensitivity. They don’t list that your whole personality can change, but talking to other TBI survivors, many of them have said the same thing, that they’re just not the same person they were before, and things that they used to love don’t bring them joy anymore. And so you have to learn to find new things to bring you joy now.

Alicia: So you said during the time between 2006 and 2013, you had a really hard time getting a diagnosis, getting people to believe you, and finding help. Did you find any comfort or help during that period?

Lynn: Well, I was very lucky to have a partner. I can’t imagine going through it alone. My partner, Doug, stuck by me the whole time, and it was far from easy. I mean, we’re both human, and it wasn’t perfect. It was — it felt like we were at the end of our rope and couldn’t do it far too many times, but we’d say we were going to quit, take the night or the weekend off, and then go, “Okay, we’re going to figure this out.”

And if you don’t have somebody strong in your life like that — I would beg anyone who doesn’t have someone strong in their life to find a support group, to find strength outside of yourself. It’s not something you can do alone.

Alicia: I know from personal experience how important it is to have that partner to support you. But so now we fast-forward to 2013. Your life changes again. Tell us about that.

Lynn: Right. I was in and out of the wheelchair for six years — the first few in the wheelchair and the next few with a cane and barely using the wheelchair. And I stopped using the cane in the summer of 2012, and I was thrilled. I started taking acting classes in the end of 2011. I literally spent six to eight months after I stopped walking without a cane and built up a profile on IMDB, had a great resume going. 

The Boston Marathon attack happened. Life happened. And I think that maybe not everyone could relate to a terrorist attack, but people have things in their life that happen. Just when you think you have a plan, life has other plans, and maybe a loved one dies, or a house burns down, or you lose your job, or something happens. Life happens. And there’s a tragedy that everyone can relate to which derails your whole plan. For me, that 4/15/2013 changed the course of the rest of my life. I had plans, and it just derailed them.

Alicia: Can you tell me about that day?

Lynn: There’s a big wall that they put up for the press at the finish line. It blocks the finish line, and everybody gathers just at the edge of the wall so you can see the finish line around it. And that’s where we always stood, and that’s where they put the backpack. 

And that’s where we were headed that day was — we were getting up from our place. There was one sidewalk café at that time, and I decided to go early and get the table closest to that group of people because I wanted to sit down this time. And so we sat down and had lunch and were waiting for the check.

And I went to the bathroom, and this is another life lesson. There were girls in the bathroom chitter chatting — it was a single-seater — being annoying to people, and there was a line to the bathroom, because it’s a half a million people. And they’re taking selfies, and they’re chatting, and they’re texting, and just — you could hear them from the other side, and we were all so annoyed. And if they hadn’t done that, we would have gotten up and left and been standing where we always stood, right next to the backpack. So never judge anything bad or good too quickly.

And then by the time I got out of the bathroom — I always carry a red lollipop with me now to remind me to be patient, because as I was leaving the bathroom, this red lollipop fell out of my pocket, and I was looking for a trashcan, and that wasted a few minutes. So again, I was a few minutes before I got up and would walk over. We were just getting up, and so it delayed us just enough.

And I keep that red lollipop to remind myself not to be annoyed when I’m stuck in traffic, not to be annoyed when somebody cuts me off or takes my place in a line, that everything happens for a reason, and just be patient.

Alicia: How did this impact your headaches and your migraines?

Lynn: It was like Groundhog Day for me. I woke up in 2013 the day after the attack, and it was like waking up in 2006. I was throwing up, nauseous, vertigo, extreme headache, very irritable, mood swings from angry to crying all day long back and forth. And these are just [clichéd?] signs of head injury.

But when we went to the famous local hospital in Boston — and I didn’t [inaudible] to go, because if you’d seen what we’d seen, you would know that they had their hands full. And I wanted to make sure that anyone that had even a tiny cut on the outside of their leg got service first. So I waited 24 hours, and then I called and asked how the emergency room was doing and would it be okay, and they gave me permission to come in. 

But when I got there, they [inaudible] me all day, didn’t let me see any doctors, and told me to make appointment with your neurologist, make appointment with the physical therapist, make appointment with the hearing specialist, make appointment with [inaudible] doctor. And you’re just like, “Okay, I could have done all of that from home. You’re just not even going to do anything, not even run a — nothing.” I think they did a blood test and that was it. I’m not sure what they were testing for. Maybe they thought I was on drugs ’cause I was kind of hysterical.

But they were just going to let me sit there and watch me and not do anything. And after eight hours, I checked myself out, and all they’d written on the form was “anxiety.” They didn’t even mention the bombing. They just said I came in because I was anxious.

Alicia: That is terrible.

Lynn: And I thought, “That’s invalidating.” It just felt so disrespectful, and I’ve never ever raised my voice to a doctor — and I still see doctors several times a week — but I actually yelled at somebody that day, and I’m not proud of it. It was the brain injury talking. I was just very on the edge for at least the first two years, and that was Day 2 — Day 1, the day after. And I just said, “A bomb just blew up in front of me! You people just don’t seem to have a clue that that’s not just anxiety!”

I’d gotten thrashed emotionally, mentally. I became extremely depressed because I felt like I fought so hard for six years to get out of that space, and in one instant, just a moment, somebody put me back into that space where I’m lying in bed. The vertigo’s happening. I’m so nauseous I’m throwing up all the time. I can’t walk right. I can’t talk right. And I just — I was angry. I was really angry for the first two years.

The tendency is to try to just stuff it all and not express the anger because it upsets people around you and it silences the room. You can’t be angry, but it’s like a cancer that will just fester inside you and bubble up at all the wrong times if you do that. You really have to find the right therapist and the right kind of therapy and do the work. And it’s hard work. It’s hard work, but it’s worth it.

Alicia: Speaking of hard work, what did you do in 2014?

Lynn: Oh, we were given bibs — well, the option of having bibs to run the marathon because some of the injured were runners. Even though the device was on the sidewalk, there’s shrapnel. And at first, I just — I found out about it in support group at the hospital, and everybody was so happy, and they were hugging each other and excited. 

And I didn’t want to be Debbie Downer, so I went to the bathroom, and I just cried. I was so angry. I’m just so angry that it’s one more thing I won’t be able to participate in. I’m having trouble walking, and they’re telling me, “Here, we’re giving you the opportunity to run a marathon.” It just seemed like salt in the wound. I couldn’t see it for the gift it was.

Alicia: And just for the record, you’re not a runner, right?

Lynn: I’m not a runner, and at that point, because of the back injury — I had a herniated disc — I just was having trouble walking, let alone thinking of running a marathon. And I gave myself a week. I let myself be angry for that night or two, and then I thought about it, and I said, “You want to spend the whole next year while everybody else trains and a [cool?] marathon just being angry? You know how exhausting that’s going to be? I mean, who are you punishing? Yourself?”

And so I thought about it, and I decided I’m going to try. At least if I try, I’ll know I did my best, and that’s how I look at competition. I’m not competing with him or her or you. I’m competing with me, and as long as I know that I gave it my best, I’m not disappointed in me anymore. 

I have set up different standards for myself than I had before the attack. I am often happy when I show up to an event, and that’s where I set my limit. My victory wasn’t going to be at the finish line; my victory was at the starting line. I was terrified to think that I wouldn’t be able to walk a mile, let alone 26 miles. I just was afraid of so many things that — in the [terror?] of 33,000 people are at the start of this marathon — terrified.

So when I finally made it to that starting line, that was my victory dance. That was my celebration, just that I’d made it. I was already proud of myself. I didn’t even care how far I got in the marathon.

Alicia: That’s an accomplishment for anyone, but especially someone who’s been through what you’d been through.

Lynn: My poor boyfriend, Doug, had to run his own marathon in 2014, but we had different starting times. I was starting with the mobility-impaired people, and so he had to walk a mile before he did the marathon to drop me off to the mobility-impaired start. 

He dropped me off with a stranger, Sarah Reinertsen, who was a rep from Nike, because he just felt badly. I’m crying, and he’s like, “I can’t just leave her alone crying on the lawn. I don’t know what to do with her.” And so poor Sarah just was like, “I guess I’ll watch her,” and she left me in the first mile of the race. 

And wouldn’t you know it, I got to mile 23, and I’m just dragging one leg by then. I’m barely upright. The medic has told me that they’re taking me off the course and it’s no longer my decision, and I’m mad, and I’m fighting this. And I just told them — I just had an instant that if I stop here, I won’t finish, and he’s like, “We’re just going to take off your shoe, massage the one leg, and put you — we’ll let you go once you can walk again.” And I’m like, “You know what, no. I just have a feeling if you do that, I’m not finishing.”

I look up, and who’s right there, like 20 feet in front of me? Sarah Reinertsen. And she looked just as shocked as I did ’cause I don’t think I thought I was going to make it that far, and she certainly didn’t think I was going to make it that far. 

And she started pulling me along and calling to me, going, “We’re doing the last three together.” And she would call me like her most prized pet and pull me on a little imaginary leash. “Come on! Come on! You can do it! Come on!” And I needed that — literally every minute I needed another “come on” until we finally got to the end.

And Boylston Street — I was so shocked. Even though I live in the neighborhood and I’m there all the time, there’s never a ton of people. There’s never a party, and it’s not shut down to traffic. And when we got to Boylston Street, it was just a wall of screaming, just a wall, and that’s all I could hear.

And I had a panic attack. I blacked out. I was irrational. I was just bawling my eyes out and telling Sarah I wanted to go home. Sarah had no idea that — I don’t know if anybody had any idea how we would react when we hit Boylston. And I just was sure that [when I heard?] screaming, that something horrible was happening again.

And she just didn’t understand, and she kept saying, “Sweetie, they’re not screaming; they’re cheering! Sweetie, they’re cheering! It’s okay!” And she’s got my shoulders. And finally, she got through to some kind of logic, and she said, “Honey, you see all these police? You see all these people? They’re not going to let you off the course. The only way that you get to go home is to cross that way.” And that was how she got me to cross the finish line, was she [inaudible] that I could go home if I went that way.

So it was funny: I did 26 miles, and when it came to the .2 at the end, I was ready to quit. I just was too scared, and that was that.

Alicia: What’s it like living with an invisible disease?

Lynn: It’s very difficult. You find yourself acting — I don’t know. It’s almost not rational that you need validation for what you’re going through, and you find yourself being jealous of people who are being supported, and you don’t begrudge them any of that support. You just feel like I need support too, and it’s very hard to ask your friends, your family, your boss for accommodations when you have something like migraine or TBI because they have to take your word for it.

Alicia: So tell me about some of the other treatments that have worked for you?

Lynn: Hyperbaric oxygen therapy. You’ll find it under H-B-O-T. They call it HBOT for short. And it’s not covered by insurance. That’s the bad news up front, but you can usually find it for 100, $150 a session, and it actually works. I don’t think I’ve ever met anybody that it didn’t help. It’s — oxygen heals tissue, and the tissue — if [acute?] damage is the problem, it will help. 

The other thing that’s helped tremendously is cannabis oil. I vaporize cannabis oil at night, and I take CBD oil under my tongue in the morning and at night, and these things have cured my insomnia, regulated my sleep cycle, reduced the level of my migraines to the point where I haven’t been to the ER for a migraine in many years now because I can handle the pain now on my own.

Alicia: What is the best advice you would give to other people who are suffering from traumatic brain injuries?

Lynn: The one thing that we both always want to leave everybody with is never give up hope, and that involves controlling other people, not allowing other people to take away your hope, even if they’re wearing a white coat and have six letters after their name. If they tell you that nothing else can be done or you’re not going to get any better, find another doctor, period. You deserve better.

Alicia: Great advice, because I can’t tell you how many people say it just broke their heart. They were deflated when someone said, “That’s it. I can’t do anything more for you.” And I know you were one of them.

Lynn: And I kept thinking, they’re the expert. They’ve had 12 years of expertise in this area. If they say I won’t get any better, then I’m just going to go home and cry about it, and that’s what I did. And now I realized I have found treatments and they did improve me. I’m not cured, and it’s up to you whether you’re going to continue to grow and heal, not them.

Alicia: You are such an inspiration. I can’t even begin to explain how happy I am to get to know you.

Lynn: Well, the feeling is absolutely mutual, and I’m so grateful that you have given me a voice to create this awareness, because I really believe that it’s our job and it’s completely within ourselves to heal each other.

[music]

Voice-over: Teva is committed to the goal of transforming the lives of those suffering from migraine by creating solutions to reinvent the migraine paradigm by placing people at the center of everything they do. You can visit www.moretomigraine.com for tools and resources for living with migraine.

Thank you for tuning in to Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.

This podcast is sponsored in part by Amgen/Novartis, Teva Pharmaceuticals and Alder BioPharmaceuticals.

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