Simon Lewis, former USC professor, Hollywood producer, and author of Rise and Shine, The Extraordinary Story of One Man’s Journey From Near Death to Full Recovery, was kind enough to sit down and give us a candid interview about his life and what he has learned. Simon is noticeably well-spoken (and I’m not just saying that because everything sounds good in a British accent). He chooses his words well and clearly knows more about the physiology of the brain than most. This quality is admirable in and of itself, but even more so when you consider that Simon experienced a traumatic brain injury (TBI) earlier in his life. We got the opportunity to have a long conversation with Simon about his experience recovering from his injury and ask him what wisdom he could share with other TBI survivors. He had a wealth of knowledge to share.
Chris: I guess my first question would be, what advice would you give TBI survivors who are looking for the best way forward, or the medical care? What can they learn from your journey, from finding the assistance that you needed?
Simon: First is there’s a really important question that brain injury survivors need to know to ask. It’s two words; “what else?” “What else?” I would make progress and then reach what is known as, and is probably very familiar to a lot of brain injury survivors, the plateau. And the question then becomes, “how do I get off this plateau?” And the question to know to ask providers is, “what else can you do for me?”
When some people receive all the physical therapy that their insurance plan provides, and their therapy ends the moment that the insurance is exhausted. The question of “what else?” partly depends upon whether the door remains open to further therapy. The tragedy is that there are a lot of brain injured people whose insurance continues until it’s exhausted and at that point they still need more help. So, if I can add an extra layer to help other people in the community, is to have the question, “what else?” in mind as early as possible, and to watch for the signs that you’re reaching a plateau in your recovery as early as possible, because the insurance clock is always ticking.
So, to come back to your question, Chris, and my answer, I would say, “be aware of the ticking clock that your benefits are being drawn down against.” If you can get onto Medicare by reason of disability, that would be a very good thing.
It’s a little different with all of my broken bones, but with a broken mind, the mental aspect, if you’re reaching a plateau, ask the question, what else? Look to the community. And I want to say, about the community, I think it starts in a way with immediate family, if they are both patient and understanding. And I think that independent living centers have a lot to offer in that particular area without adventuring into offering medical care.
Now, I want to say one other thing because I’m hoping that this will find its way in somewhere. There’s a belief that everything is available on the internet, but that is not true in the area of medical care. Information in the world of medicine does not flow. It does not flow across the Internet very effectively. The information pools around centers of excellence. So, what does that mean? Why is that? The difficulty about information not flowing in the world of medicine is that if a patient goes to a facility, goes to their doctor, and their doctor sends them to a clinic, if that particular brain injured person needs a certain kind of therapy that is not offered at that location… they’re not going to say, “you need to go to the place across town, that does have somebody.”
Chris: Right, they’re not necessarily going to refer you to their competitor.
Simon: Right. So, there’s a lot of specialized knowledge that pools around, for example, Casa Colina Pomona, which if you look on the Internet, it’s a very impressive, clearly well-equipped facility dedicated to rehabilitation. But if you’re 20 miles away from that at a general hospital, they’re not going to say, “do you know, by the way, you could drive 20 miles from here and you could actually go to a…” they won’t, for exactly the reason that you just said.
So, the two things I would say is have the question, “what else” in mind, and know that person you’re asking may not make that referral until they’re done, because I can tell you that at the point that somebody stopped making- I never say this in the book, but it’s sort of implicit- at the point that somebody stopped making money out of me because they’re done… that’s when they say, “you might go see Dr X,” because at that point, they’re losing that paying ticket anyway. The one other thing I really hope to add is that our resources, yours, Independent Living centers, are a wonderful clearing house to provide more resources.
Also, everybody in every state should be aware of their victims of crime program; it unlocked $30,000 for treatments that were not covered by my insurance. And then if you want to look it up, since then, they have increased the amount. I don’t want to say it because I don’t recall. I used every dollar it paid for the reconstruction of my jaw, basically.
Chris: Yeah, that’s a good point. And anything like that, that you feel like many TBI survivors don’t know would obviously be very important for our community to know about. So just a little bit of background on us. A lot of people that come to us, at least here at the Independent Living Center of Southern California are lower income. Many do not have insurance or they’re on Medicaid or Medicare. I’m curious, what advice would you have to those that maybe don’t have the best insurance? Did you find any methods that didn’t cost you anything that you also found effective during your recovery?
Simon: Some of the most helpful therapies would not be cutting edge or expensive. What they took was time and finding the person, the clinician who knew how to administer them. And let me now try to be a bit more specific, because one of the questions that you asked me to think about was “which were the most helpful therapies?” because we tend as a society to go straight to the technological breakthroughs, the advanced surgery to remove the plates from my skull, all of which is very expensive, but all of which, by the way, is covered by Medicare.
But it’s the hands-on therapies which are not necessarily expensive. What are the most helpful therapies that I came across? One of them is called cognitive training. It involved looking at optical illusions and trying to understand them. [The trainings] were essentially like children’s exercises. What my therapist did was that she gave me full scale IQ test. What the IQ test does basically, is it measures across a number of different indexes how the brain is working different tasks. And what the clinician does is look for what’s called scatter, which is where you expect somebody to have roughly similar scores in each category of thinking, basically. And scatter is where somebody is scoring very well on some indexes and very badly on others.
Chris: Very interesting. So, something that we really key in on as an independent living center is that social element and the importance of keeping an uplifting environment, especially because of what everyone is experiencing in COVID. People have been isolated. It’s conducive to more levels of depression and feelings of hopelessness. If it’s okay, Simon, I kind of want to circle back to what you were saying about family and friends and just the importance of also looking outside the parameters of medicine, what can a TBI survivor do? Or how can family or friends or even an independent living center, for that matter, what can we do to help speed along someone’s recovery?
Simon: Yes. And I would say… take people at your independent living center through beginning, intermediate, and then advanced exercises. Take one example of a thinking process that can be damaged and will not repair itself, but if you provide the person with targeted therapy, can repair. For example, when you read a word on a page, let’s say the word bird, and the person without injury, instantly when they do a functional MRI, that person is essentially imagining a bird. That’s the way the brain does it. If that pathway has been damaged, in my case, vast pathways, about a third of the right side of my brain, so that was slow and difficult. So, the children’s exercises at your independent living center might be sitting in groups, looking at words and practicing what the word represents.
What I encourage people at your independent living center to understand, about family and friends, is the need for patience. There were some I’ve met who wanted to know how quickly they’d be able to get rid of their migraine headaches. And [the doctor’s] answer was, “it took 20 years for this problem to develop. It’s going to take a while to take care of it.” And I know that a difficulty with many brain injuries is that they happen in the blink of an eye, as my injury happened. Here we are 25, 26 years later, still dealing with the consequences. But this is not something where you do an exercise with a metronome, and you’re done. Another example of an exercise that I think is very helpful and also could be done at independent living centers is music therapy. Music is stored in a separate area of the brain. That’s the bottom line. That’s why you may know of cases where people have the inability to form words, but when a song plays, they can sing the lyrics. When the music stops, they can’t find the words again. That’s because music is stored in an area of their brain that [often] has been spared from [the injury]. One of the things I did with one of my conditions was I would listen to certain kinds of rhythmic music, which is beneficial.
None of this is expensive equipment. The visual training is they show optical illusions and some sort of like, Kaleidoscope type things. Memory exercises. There are a lot of programs, a lot of people who make money out of selling [computer exercises] online, basically [saying] make your kids smart, improve your memory. There was a huge study done, I think, in England, where they had thousands or hundreds of thousands of people watching the television screen doing these computer games, exercises. And they all then took IQ tests. Basically, [the exercises] made no difference. So, how is it that’s true? Because what it tends to do is, instead of building neuroplasticity, it just encourages people to come up with strategies that temporarily help them remember where the red card is, [which doesn’t have] any real-world context. Why should a brain be trained just to remember for a few seconds where a red card is? And it’s not tailored to the area of thinking that person has damaged. It’s completely lopsided. If something has not been damaged, you don’t want to work on that. The proof that it’s working is that you feel really, really tired after about 15-20 minutes. It’s like mental yoga.
And I think one of the great things I went to- I think it’s called, Thank God I Care, TGIC, which is not quite what it was now, but at that time, at Northridge Hospital, there was a small house across the road. It was a non-residential facility with a range of therapies being offered each day of the week. It was fantastic. One of the exercises that meant a lot- and maybe again, this is something independent living centers could do- where each week there would be groups and one person had to plan an outing, which is executive function. Then there was a van. The TGIC house had a van. Somebody else had to map the [route], and somebody else had to do the planning about where we would have lunch. And when I was in a very, very difficult, difficult state, both physically and mentally, it meant a lot to be participating in the group, saying, “Where are we going to go?” Yeah. “Where are we going to go? Where are we going to? What are we going to eat?” I will never forget the first time after my crash that I sat in a restaurant and looked at the menu. And we were figuring out how to split up the bill… We didn’t need somewhere expensive. And there’ll be some people who will become very frustrated. Again, that’s a clue as to which of their processes of thinking have been affected by their injury.
[Another] exercise is having panels of a cartoon like you see in an old-fashioned newspaper and you put them in the order in which they occurred. And that was almost impossible for me… What it was, was a restaurant scene. That’s what I’d call it, with a glass on a table and a man sitting at the table. And the glass is on the ground, and the man is looking surprised. It was impossible. I still have difficulty with the answer being that the glass started on the table and fell on the ground and broke and spilled because part of me is still holding on to the idea of flat time somehow? Well, maybe not. Maybe it was on the ground broken, and he picked it up and put it on the table. And I can’t quite explain why it’s not broken at that point.
Chris: You are such a positive, hopeful guy, Simon. How did you stay positive and how did you maintain hope through this process? What can you tell other people that are maybe just starting this journey that are seeing all of the challenges in front of them?
Simon: That is a wonderful question, actually, Chris. I’ll start small, and then I’ll try to expand it. I woke up in the hospital. My parents came to visit and were leaving the hospital. My mother turned to my father and said, I just realized something. Simon does not realize he’s been in an accident… And I didn’t. I felt that I had been reborn in that room. I had no idea I was in the hospital and also no idea that I was married. Nothing. And then the little pieces of memory came back to me in fragments. And then I learned what had happened. I had been in an accident.
I think this is another question faced by many survivors; “What next?” I had to decide- bearing in mind that I couldn’t move, the nurses are coming in every 15 to 20 minutes to rotate me 24 hours a day, and my jaw is wired, my skull, arms and my leg, and pelvis were crushed. Everything. So, what I found was. the what next question, “am I going to roll over and give up?” And the question that follows after that- “then what if I roll over and give up? What comes next?”
“What comes next?” And ultimately- and of course, I couldn’t go and jump out of a window or anything like that. I was completely in a dependent state. But I think that is the question that survivors have to confront; do you roll over and give up? If you roll over and give up, what’s going to happen next? Because basically, if you roll over and give up, what’s going to happen next is not very much because you tend to stay on the recovery plan that you’re on.
If you’re not going to roll over and give up, the question, then becomes what is the action plan? And the four A’s as you probably know, are Awareness, which is understanding what has happened. And the awareness means constantly trying to understand more about your condition. From Awareness, you go to Acceptance, which is understanding the certain things that with current technology are not going to change. But… there are advances all of the time. But then that leads to the final two, Action and Adaptation, because closure isn’t real. You’re always going to regret that the person you were is no longer with you. I regret that the person I used to be is gone, but I celebrate the person that I am. And the final A is Adaptation, which is again, adapting and building bridges to the community. The other thing that will happen if you do nothing is that gradually the world will move on without you.
Blair: To end, is there anything else you think TBI survivors should know?
Simon: HICAP is extremely important for you to talk to your community about. This is specific to California. It’s staffed by volunteers, and I think it’s an 800 number, but you’ll find it online. And their reason for being is to provide Californians with information about how insurance works. Are they eligible for Medicare? Because nobody tells you everything you need to know, So no one’s going to volunteer it . And Medicaid aren’t likely to contact a particular person to say, “you might be better off transitioning to Medicare in six months.” That’s just not the way the system works. [The HICAP staff are] good people and they’re providing information. They’ll listen to what a person’s insurance situation is and say, “Well, that’s probably the best you can do.” Or “there are these alternatives you might consider.” What’s nice about that is there’s no legal exposure for anybody because they’re providing information.
Chris: Yes, that sounds like a wonderful resource. And thank you for sharing your journey with us. Simon. And I just really I just can’t overemphasize how much we appreciate you spending time with us today.
Simon: I can’t thank you enough Chris, for all you do for the brain injury community and to help my work reach survivors.
If you are a TBI survivor or simply want to learn more about Simon’s experience, you can learn more about Rise and Shine at the link below. There is also an audiobook version narrated by Kelsey Grammer.
This interview has been edited and condensed for clarity.