Loss and transformation: an interview with Kevin Johnson

In 1999 Kevin Johnson (not his real name) was a math and physics prodigy working towards an honours degree at university. His marks ranked him in the top three percent in his program area and he had been offered a full scholarship to Cambridge University, widely considered one of the top universities in the world. A year later, he was utterly failing, having fallen victim to a brain disease known as degenerative schizoaffective disorder. This is the story of the collapse of his life, the personal transformation that led to a radical reordering of his priorities, and his eventual triumph by rebuilding a more meaningful life.

Matthew Larmour: You were born on the West Coast of Canada but spent most of your formative years living in Austin, Texas. What was it like growing up there?

Kevin Johnson: Austin is the liberal part of Texas. There’s a very strong alternative element, but also a very conservative element – hyper conservative and intolerant. It was somewhat of a difficult time, because my mother was a student at the University of Texas, and we were very poor, so we were living in the poor black and Hispanic neighbourhoods. The public school that I went to was [made up of] half white rich kids, and half poor black and Hispanic kids. It was very polarized and there was much violence and strife in the school because of this. Because I was white and living in this neighbourhood people thought I was racist and treated me very aggressively. I was beat up. And then because I went to the school with many rich white kids but wasn’t rich and wasn’t living in the white areas of town I would get shit from them too.

ML: That must have been really difficult. You seem like a sensitive guy.

KJ: I am a sensitive guy and I was at that time too. During that period of my youth I learned how to shut [my emotions] down. I couldn’t be the sensitive guy I was, and I actually went through a period where I became a bully because I was really shut down and I had all this anger from being a victim, so I became a victimizer. Eventually I started coming out of it and took a vow to become a pacifist. But I was still completely shut down. When I became emotional because people confronted me with things, like when I was in therapy, quite literally I would become unresponsive – I would just stop communicating, just stop acknowledging.

ML: By this time you had moved to the west coast, and met a woman who you fell in love with. But your past haunted you.

KJ: I had been trying to break down [these emotional blockages] for quite a long time and instead what I had been doing was building up a new shell of my own, a whole kind of exterior Kevin that people kind of bought into. It actually almost destroyed Amy’s and my relationship – the relationship almost didn’t happen. I was in love with her but I was kind of afraid, so it came out in some very disruptive ways. I had an episode where I met her in a staircase. That day she was basically ready to leave her boyfriend to be with me, and I spent an hour telling her why she was bad for me.

ML: When did your illness hit?

KJ: It hit the latter half of my first year of university. Initially it was mostly mania and depression. I was overworking myself quite a bit. And then I would go through periods of being depressed and being very low functioning. And it started to evolve into auditory hallucinations and then persistent visual hallucinations.

ML: You had a particularly pivotal hallucination that may have saved your life. What happened?

KJ: [Amy and I] had broken things off. I was heartbroken because I really felt Amy was the person I was looking for in my life, and I had destroyed my opportunity [because of the staircase incident]. I had been setting aside pills to attempt suicide. I was going to try to kill myself and the fox [a character that repeatedly appeared in Kevin's hallucinations] appeared, and I expected the fox to try to talk me out of it, because he was a benevolent figure of sorts. He said, “If you want to be with her you have to be willing to die.” I just thought that was such a weird thing to say, sitting here getting ready to commit suicide. In retrospect I interpret his words differently [than back then]. Killing myself wasn’t dying. Killing myself was ending, staying the person I was, and stopping existing. Dying was something altogether different. [It meant becoming] a different person, and this was the only way Amy and I could be together.

ML: What convinced you to finally seek help?

KJ: I had been doing a computer science course, and was getting an A+. I went in for the final exam, hallucinated a talking fox, and wrote pretty patterns on the bubble sheet, so I ended up getting a C+ on the course, because I massively failed the final exam. That prompted me to get connected to the university health services and then a psychiatrist and I eventually got on the right track with medication.

ML: How did your illness affect your sense of identity?

KJ: Well the biggest part of what I considered my identity before the illness onset was my academic achievement, and that was very much ripped out of my life. When they took CAT scans to see what parts of my brain had been damaged, it was depressing. The math skills were [gone]. I couldn’t hold anything in my head very long. [I went] from being the person who was the top at the university to having to drop out.

ML:  I imagine losing that must have taken a huge emotional toll.

KJ: I worked [for a while] at some…dead end jobs because I was kind of broken. I had lost all confidence in myself. I didn’t really feel like I deserved anything. I had lost all my friends from high school. When I was in the mental hospital, I called on some of them to visit me, and they were extremely uncomfortable. And one of the things I was constantly punching myself in my head with was the idea, Why would anyone want to be with me, as a partner, boyfriend? And what do I have to offer?

ML: How did you climb out of this and start to turn things around?

KJ: As I was going through this Amy and I were becoming friends again. And she said, basically, that I had my love to give, and that my love was valuable. That totally blew my mind, because I had never given something that simple value [before]. I had never thought of the act of loving someone as being valuable. That was really a big turning point for me. All of a sudden all the other things didn’t matter. The achievement routine seemed unimportant. The job I had seemed unimportant. All I really wanted to have in my life was a wonderful relationship with this person.

ML: So your priorities changed from academic achievement and career success to being primarily concerned about the quality of your relationship with Amy and people in general?

KJ: I’ve definitely been on the trajectory of being closer with friends and people in general. I have probably fewer friends now than when I was successful before, but every single one of the friends I have now I feel deeply connected to and I never had that before.

KJ: To put it into perspective, when I was at university and coming to terms with my illness I registered with the Students with a Disability Resource Centre. One of the things the doctors recommended was that I have more time with my exams and have monitored exams so that if I did have a psychotic episode there would be somebody there to help me out. This didn’t sit well with many of my friends because I had extra time over what they had. A friend was basically rousing the mob against me [saying things like] “he gets extra time” and “he’s got an unfair advantage.” That’s the friendships I had that were shallow enough that people would turn on [me for] something like that. Now I have a few select friendships but I feel like they will be friendships for life.

ML: Had you not undergone this change, do you feel like you and Amy would have stayed together?

KJ: Probably not. And I think that it had to happen when it did happen. If it had taken much longer, we probably wouldn’t be together. And to be honest I probably wouldn’t be here. But it did happen when it needed to. Looking back I see a lot of wisdom in it. Nothing less traumatic than that would have broke me out of the cycle I was in, nothing less traumatic would have changed my life path to what it is now.

ML: You lost a lot but it seems like on the whole the disease has given you more than it took.

KJ: Comparing the constant pain and anguish I was in at that time, to the pretty much pervasive contentedness and capacity for joy that I have now, I don’t care that half my brain melted away. I don’t care that it makes things difficult sometimes. It’s worth it.

ML: You’ve built a radically different career from the engineering path that you were on. From what I understand you were always a very creative person, but had abandoned an artistic career in favour of the prestige of science. Now you do leatherwork, which is quite a creative profession, so it seems like you’ve come full circle. Do you feel like what you are doing now is more true to who you are than the path you were on before?

KJ: Absolutely. One of the things I find incredibly satisfying about leather work and crafts in general is getting out of my head. I spent so much time when I was younger living in my head, totally disconnected from my body and the results of my labour. It was in some way deeply unsatisfying. Now when I make something I can  hold it, I can touch it, I can see it, somebody will wear it and love it for years.

KJ: [Many people are] just trading time for money. We don’t make a lot of money, but I don’t feel like I’m just trading time for money anymore. I feel like we’re building something together, which is an amazing feeling. I feel like I am forming relationships with my regular clients, creating beautiful things and making a contribution.

ML: The Realized Self is about the relationship between personal change and world change. How do you think your personal transformation has affected your relationship with the world?

KJ: My priorities have shifted. I used to not only be into achievement, but also into activism. I was very active as a feminist, I was very politically minded. I focus now on how I’m living, and how I act out my own life. I want to live an ethical lifestyle, and make that my contribution.

ML: We can advocate for change until the end of time, but people need to change as well as systems.

KJ: Exactly , I think there’s value to both approaches, and I think they need to happen together. People trying to take the steps to live an ethical lifestyle, a loving lifestyle, and people to rattle the cages and get people to rethink their paradigms. I’m just not that person anymore [who rattles cages]. And I’m happier being this person.

In her profound book Living Happily Ever After, Marsha Sinetar tells the story of the human struggle to achieve a meaningful life and overcome adversity. We will never escape pain or loss in our lives she explains, but if we can learn to let go of what was and adapt flexibly to changing circumstances, we can thrive even in the midst of turmoil. We can live “happily ever after.” If there is someone who has demonstrated this incredible human potential, it is Kevin Johnson.

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