Talking with Nate Cannon

Nate Cannon’s story is multiple stories woven into one. It involves gender identity, suicidal thinking and increasing physical discomfort, along with an incredibly tenacious will. He’s written one memoir and is applying to pursue a master in fine arts so he can work fully on another. His work, both in writing and public speaking, was recognized this year with an invitation to attend the GLAAD Media Awards.

Here, he talks about how these issues have come together _ the first sentence of this interview hints that it hasn’t been easy _ and how he has come to share his story so openly.

Along the way, he talks about striking a balance in public speaking, in being real about life’s difficulties without turning off people who expect a perfect hero. “I don’t want people to be let down to learn that I’m not entirety cured, which is not going to happen to any of us,” he says. “It’s human to struggle. It’s a sign of strength.”

Please introduce yourself. Who are you?

That’s a complicated question. I am a fighter and a survivor. I’m transgender, an author, a public speaker, a recovering addict/alcoholic, and I live with an incurable neurological disorder called dystonia. I developed this condition in large part because of a brain injury I sustained during a suicide attempt when I was 17. Apart from that, I advocate for LGBT and mental health awareness via the organizations GLAAD and NAMI. I’ve also worked with dystonia organizations and do advocacy in a lot of different areas pertaining to neurological illness.

I’m also an avid marathoner. I’ve run the Twin Cities Marathon the past five years. I began running when I got myself sober almost 10 years ago now. I was told by my neurologist when I subsequently developed dystonia that I would probably never be able to run a marathon. I like to prove people wrong, so to be able to finish the race five times in a row has been very rewarding for me.

I have found that the complexities of what I’ve gone through made it difficult to reach a niche audience, if you will, because there are so many facets to my story and who I am. It’s frustrating at times because my goal has been to reach as wide a range of audiences as I can. I present my story in layers to show that mental health and suicidal thinking and actions are very much related to other areas of our lives. Those other areas have a very big influence on how suicidal thinking might be manifest in the actions we might take.

My heart and soul is my first memoir, “Running on a Mind Rewired,” which describes my experience living with mental illness, my battles through chemical dependency and how dystonia has impacted my life and my recovery from these other illnesses.

Describe dystonia a bit for people.

The canned definition is that dystonia is a neurological movement disorder that results in involuntary muscle spasms and contractions often leading to painful movements and postures. What that really means is that the mechanism that makes muscles relax when they are not in use malfunctions. This causes muscle contractions and pulling that can be extremely painful and uncomfortable. It affects my ability to sit in a chair upright, the ability to stand tall. For myself, it developed from a brain injury compounded by chemical dependency. Mine is called secondary dystonia because it comes from outside factors. Because I had brain damage due to a brain injury, the best treatment for me is Botox injections. For primary dystonia, which is a genetic variety, sometimes you’re a candidate for deep brain stimulation. That treatment is not an option for me. I get Botox injections once every 10 to 12 weeks. It’s incredibly expensive and, as my doctor has said, it is not a perfect science. Every round is different. Sometimes I get decent relief from the pain and discomfort, other times not. The injections get billed to insurance at $11,000 each round. But it is imperative that I get these shots. Without them, I would be miserable, unable to run, and all of that would drive my depression deeper.

Dystonia impacts everything from my reaching into a cupboard to get cereal to getting groceries from my car to driving that car. It’s a life-changing condition. I’ve been living with it since 2006, but it has changed and evolved over time. It started in my neck and shoulder and has, over time, spread through my upper body now. I get about 18 shots when I get Botox now. Unfortunately, in the last year or so, I’ve had problems running. It has caused me to start to fall. The condition causes me to lean towards the right, where dystonia pulls me. I don’t know what happens, but it’s always my right foot that catches and I end up falling. So it continues to change, and it’s a scary prospect to think it could continue to evolve to where it affects my entire body.

Accepting the unpredictability of my condition, and accepting that I caused this through my own actions, is an ongoing struggle.

Why did it start in 2006?

I don’t exactly know the answer to that. I was two years sober. I had kind of gotten through what I had thought was the darkest part of my life: the chemical dependency and depression. Early in my sobriety, I got on a treadmill and started running. I then finished college, got a paralegal certificate, got a great job downtown, bought a house with my partner. Everything was going great. All of a sudden one day, I started getting a pain in my shoulder. I couldn’t understand what the pain was. I went to the doctor, who sent me out the door with antidepressants. I knew something bigger was going on. This was not “depression-related pain.” It took me almost three years to get the correct diagnosis. It was just a bad experience trying to find the right diagnosis.

I’m really of the opinion that it was much more complicated to get the right neurological diagnosis because of my psychiatric history. Because of my history of psychiatric issues, the doctors were quicker to say, “See, it’s all in your head.” I knew that was not the case. It took some time and a lot of second opinions and seeking out specialists. Finally I saw an epilepsy specialist after being diagnosed with epilepsy. I mentioned the pain, and she suggested it might be something called dystonia. She asked that I see a movement disorder neurologist. And it was indeed the diagnosis he gave.

How could there be any psychiatric confusion?

Unfortunately, with dystonia, it can happen quite a bit. Dystonia can be caused by some psych meds, particularly antipsychotics. So I think there’s been a lot of opportunity for us as people living with this condition to advocate for differentiation between psychiatric and neurological history. My experience has been that psychiatrists don’t tend to think you can have any neurological symptoms when you have mental illness. They seem to assume it’s all in your head. Likewise, neurologists tend to be more suspicious and cautious with you because you have a psychiatric history.

There is such disbelief when you get a neurological diagnosis. The acceptance process is tough when you get told you will be living with a painful, incurable neurological disorder whose trajectory is unknown for the rest of your life. It’s very scary. I’ve required a lot of reassurance from my providers that this is happening, that this is real. On the flip side, there’s a part of me that doesn’t want a neurological disorder for the rest of my life, and I sometimes find myself telling myself this is all in my head. Well, I know, after five years of treatment, that this is very real. Every specialist has recognized this is very real. But there’s been a lot of disbelief and denial. I’ve wrestled with that.

You mentioned that this came on after you had emerged from your darkest period. How did you come to be talking to me?

I knew from the time I was 17, after my first suicide attempt, that I wanted to write my story. I took public speaking in college as well. My passion was in words, and also in sharing my story with others. After I went through that darkness of chemical dependency, which didn’t help my depression one bit, I emerged thinking I was on top of the world. I decided that I was going to fight this, have the fighter mentality. It impacted me so much, though, that I was not able to continue my paralegal job. I would leave work, if I was able to get through an entire work day, and I would lay on the floor and absolutely cry from the pain I was in. And it was unacceptable to me. At that time, I was female and living as a lesbian with my partner of many years. We decided I should stop working and work on my book. I started working on my book full time in 2009. It was then that a lot of stuff with my gender identity came to the surface.

I’d been confused about my gender identity my whole life. Writing that first memoir, “Running on a Mind Rewired,” was really cathartic. I knew I was in the wrong body at age 5, but once I was about 13 I finally got the message that people around me had been delivering: “You’re a girl, you’re going to wear a dress and go to this recital, and you’re going to like it.” I put that gender identity piece so deep inside that I forgot it. When I came out as a lesbian, I thought that I had figured it out. I like girls! That’s why I was asking my mom for a sex change at age 5! In the course of writing that book, I realized that wasn’t the case. I’d been confusing my gender identity with my sexual orientation for much of my adult life. Suddenly I realized that wow, I’m actually transgender. I had a very difficult time accepting that. After all I’d done to get my life settled, all of a sudden this new thing came to the surface and suddenly I was forced to confront my demons yet again.

The dysphoria that came to the surface … I don’t understand why it’s a mental health diagnosis at this point, and you require that diagnosis to move forward with the transition. Anyway, there was this internal urgency like I felt when I was using drugs: “I need this now. And I need it to happen today.” It felt much like when I was addicted to crack. Nothing was going to stop me from getting what I wanted. The dysphoria peaked when my book came out with my female name on it. My depression worsened into the worst episode I’d ever had. My partner was struggling with my transition to be a man. And this round of depression in 2011 caused me to have suicidal thinking to a degree that I don’t remember anything. I don’t know what led up to the attempt in 2011 that resulted in my going into respiratory failure. She found me unresponsive, not breathing. I then went into a coma. When I came out, she met me in the hospital and broke up with me. She moved out of the house we owned, where I had attempted suicide, before I ever got out of the hospital. It was awful, and I felt very much abandoned.

I had nothing, no job, no money, no safety net whatsoever. It was at that point I really realized this was serious. My first suicide attempt at 17, I had brain injury, and it rewired my brain to set off the dystonia years later. But this second attempt cost me my partner, the one thing I didn’t think I could ever lose. We wanted to spend the rest of our lives together. In retrospect, I can’t imagine the trauma she must have went through, having found me hanging there, not knowing whether I would pull through. That, coupled with her struggles with my gender, must have just been too much for her to take.

Depression and suicide are just as serious as any physical ailment. All of that gender stuff needed to be resolved, though. If I didn’t deal with it, the depression would continue to be there, and I would continue to have suicidal thoughts. I’ve realized now, through my involvement with NAMI and the feedback from people who have read my book, that suicide is considered a taboo topic in our culture. We can’t shove those thoughts down. We need to talk about it.

Talking about my depression with my partner was very uncomfortable for her. She wanted to shove it under the rug. Everything was fine. That doesn’t work. The messages I got from her, and from some of my friends, was “You’ve got to snap out of this,” and that only fed my depression more and made me feel more misunderstood. That isolation prevented me from reaching out to professionals. Maybe if my partner and friends had been more educated on how to help a person with depression or suicidal thinking, maybe I would have been more willing to get the help I needed. And that could have avoided a suicide attempt that almost killed me.

So, in light of all that, I want now to be an advocate for people who’ve had this thinking or lost someone to suicide. I really want to stand up and say, “You know what, this is a part of my life.” And I believe fully that things happen for a reason, and I’m still here for a reason. I’m here to share my story.

One thing that I’ll add is what I mention when I give talks. I believe that our language is faulty when we call it a “successful” suicide or a “failed” attempt. At times my brain, when in the throes of depression, can start thinking that suicide is success and if I don’t succeed at a suicide attempt, then I’m a failure. There’s been a lot of negative thinking in my mind that if you get the job done right, all of this will be over. As a society, I think we need to make it more OK for people to talk about these feelings so that we don’t shove them so far down that when they come out they don’t come out in the form of a suicide attempt.

After all that, what support has helped you?

Interesting question. I had very little support in terms of state or county help, but did manage to get some support for a brief period of time. I cashed in my 401k to get through those first couple months. I applied for job after job. I hadn’t worked in an employment setting since 2009 and applied for close to 120 jobs before I actually got an offer. Then they asked, “You seem overqualified, why do you want this job?” It was a very difficult time. Some members of my family were supportive. Unfortunately, my dad and that side of my family has been extremely unaccepting of my transition. They have had absolutely nothing to do with me since my suicide attempt. The other side has been supportive, and it’s been a little better now that they see I didn’t stop my transition and that it really does fit me.

I advocated for myself, got my feet back on the ground with work, got speaking engagements lined up. I got a place of my own, which was extremely rewarding. And I continued forward with the transition process. That was challenging, again because of my psych history. When you have gender dysphoria, you need a diagnosis of gender identity disorder to get hormones, but if you have other things going on, i.e., depression, the professionals became more like gatekeepers than helpers. They had a lot of concerns. How would testosterone affect my depression or my past with substances? Would surgery affect my dystonia? We didn’t really know. But the initial providers were not so friendly and put up a lot of roadblocks. It was absolute persistence that was able to get me to providers who were there to help me.

By that time, my work was 9 to 5, just a job to have income. I struggled a lot with harassment in the workplace from a variety of sources, from HR at one job to clients with another. I knew what I needed to do. I kept going to work. To make a paycheck. It was almost like I had tunnel vision. And I didn’t care who rejected me. I was in such a state of that mind for about a year that I didn’t really care about much else other than focusing on getting my feet back on the ground and learning to love myself. Work, while challenging because of my dystonia and mental health issues, gave me health insurance. I desperately needed good insurance due to the cost of my care. Of course, the gender reassignment surgery was not covered, though. I decided to take a loan out to proceed with that. I wasn’t going to sit around and wait for insurance companies and our politics in this country to change. Dysphoria had almost killed me. I couldn’t let it control my life any longer, and I knew that in order to make the suicidal thoughts stop _ or at least be less frequent _ I needed to address the gender identity piece and not let anyone or anything else get in the way of my transition. Transgender folk have a disproportionately high rate of suicide. I didn’t want to be another statistic. There’s the phrase, when you get to the end of your rope, hang on tight. I just kept holding on.

What helped you deal with the depression and suicidal thinking?

What I needed at that point was to work on the gender issue and also grieve the loss of my partner. I continue to grieve the loss of her and the life we had together. We were together 10 years. We separated almost two years ago now, but it is still tough. I have to believe someone out there is going to accept me for me and love me for me. As far as depression and suicidal thinking, what helped most was talking with my psychologist. I had started seeing her in 2010. She saw me when the dysphoria surfaced, when it peaked, and she also saw me through the separation with my partner. Being able to check in with her during that time was extra important to me.

Writing was an important thing, too. Words are my heart and soul. I have to be very careful with writing when I have suicidal thoughts, though, so I don’t spin it and all of a sudden I’m writing a suicide note. It’s a delicate balance. I have to work through what I’m feeling, but I also need to try and tap into that part of my brain that wants to live. Not the part that wants to die.

Running is also key. Oddly enough, I went out for a run the morning I attempted suicide in 2011. I went out for a run, five miles, and then tried to kill myself. I didn’t even change my clothes. The endorphins, they were there, but that high wasn’t enough to overpower the depth of my depression anymore. But running gives me a natural high that rivals any drug I’ve ever done. It makes me feel I can conquer the world one step at a time.

How did your psychologist and you get along after the attempt?

I was hospitalized twice in 2011. In February of that year, I told her in a session how dark I was thinking. I went home and went about my day, and all of a sudden, police knocked on my door and took me away. She was so concerned she had them come pick me up. After I got out, I kind of gave her the what-for. I told her, “I’m here to talk to you about this, about what thoughts I have. What I don’t need is the police showing up at my door to take me to the psych ward. If I feel unsafe, I will tell you. I didn’t feel unsafe. I just needed to talk about my suicidal thinking.” At that point we made an agreement, that if I get to that stage of feeling unsafe I will communicate that to her. So I think the fact that I had communicated a lot to her prior to my taking action and attempting suicide in December 2011, even though we had made that verbal agreement that I would not take action, was helpful. She didn’t turn her back on me. She kept in contact with the psychiatrist at the hospital and was more than willing to see me when I got out. In that respect, I’m very grateful.

You’re still able to talk as openly as you like with her?

I think so. I think sometimes I would like to express a little more accurately how dark some of my thinking is. I think sometimes I hold back out of fear she will have me picked up again. I agree to be truthful and follow her recommendations: Go check in, or have two sessions this week, or let’s get you to a support group. But I do think I’m able to convey now, sometimes to my surprise, how dark my thinking can get to her, and I think she knows my getting it out is what I need. Other people have rejected me for speaking about my dark thinking. But if I can just get it out and have someone hear me and not be so frightened, then that makes me feel a little better. I don’t feel so alone. Unlike some people in my life, my psychologist never ran away, and that’s been helpful for me.

How did you decide to be so open about this, and what have been the responses?

With my first attempt, I had a pretty elaborate near-death experience. I was on course to go to college and play collegiate hockey. That near-death experience opened my eyes to the afterlife and what it means to be alive.

It gave me a sense that death may not be the end. And I believe there is a real reason I was kept on this earth. I feel strongly there was some kind of pull calling me to share my story with others. When I did manage to get to college, that’s immediately what I started getting into, doing small talks to drug and alcohol education departments, going to hospitals. I was an active alcoholic at the time and really struggling with my addiction and depression, but I still felt this need to share my story. I trace it back to my near-death experience.

I believe my purpose here in the world is to share my story and help others, whatever that means, whether that means helping a kid learn to ice skate or helping a person with dementia have a more pleasant day, fulfilling my purpose on this earth.

How have been the responses?

It’s just been overwhelmingly positive. It’s been so moving and touching and heartwarming for me when I hear the feedback I get from people, when they approach me after a talk and say, “That was so powerful” or contact me after reading my book and say, “This inspired me not to give up on myself.” That, to me, means everything. There’s no price tag on that. I’ve had a couple of negative responses from people who, primarily, just had not had exposure to people with mental illness or suicidal thinking. Like my former partner, who thinks maybe it’s best not talked about. It goes back to that taboo nature, to how we talk about suicide in our culture.

What have you seen with NAMI as a speaker?

I very much appreciate being involved with NAMI. It’s been a life-changing experience for me. During our training we got the message not to get too detailed about attempts, not to describe the method. That can be a challenge for myself because the brain injury I had was very much tied to the method I chose. Their position was twofold. One, they don’t want to traumatize people in the audience. And two, they don’t want to plant a seed for people who never thought about hanging. I appreciate that. I remember when I was in the psych ward when I was 17. I hadn’t considered hanging as an option until they took my shoelaces, my belt, all these objects that implied hanging, and that seed was planted in my mind.

In my own talks, I talk to all kinds of students, as well as outside audiences, from adolescents to older adults. I have to gear my talks differently to the group I’m speaking to. A group of nursing students might be very interested in how a hanging attempt might result in a brain injury, but that would not be appropriate for a group of middle school kids. It’s all about knowing your audience. I think NAMI’s concerns are, they don’t want to plant seeds or traumatize anyone. I understand.

Can you still get your messages across?

For the most part, yes. Being in places like a coma, having sustained an injury that caused a neurological condition, kind of requires a backstory. But it’s important to communicate that without opening fresh wounds for audience members. I think it’s important, too, when I get into that topic to express empathy in how my story is being conveyed. I don’t want people to be intimidated by all I’ve gone through. It’s my hope to carry a message they can relate to.

What do you mean by “intimidated”?

That, “Wow, that was gruesome.” Like a very graphic horror film on Halloween. It could be a little intimidating for an audience member.

Also, I don’t ever want people to feel sorry for me. Sometimes I hear from people that I’ve been through so much that they can’t imagine how I’ve made it through all I have. I don’t want audience members to be intimidated by the severity of some of my experiences. Everyone’s life is different, and I always try to remember that for as bad as it can get, there is always someone in a worse position. I don’t want audience members to feel like their symptoms are trivial or minor compared to mine. I want to reach them in such a way that will inspire them to get through their own challenges, whatever those challenges may be.

What more needs to be done to make this conversation more open?

In general, I think we need to understand as a society that for a lot of us, suicidal thinking can be very persistent, and just because we’re not in an immediate psychiatric crisis doesn’t mean that the thinking isn’t there. A lot of people think, “Well, you went to work today” or “You just ran a marathon, why are you still thinking about suicide?” Well, I don’t know, but the thoughts are still there. The thinking is still there. I can’t make those thoughts go away, and it can get frustrating at times. Sometimes I think, “Gosh, I’m going to lose another friend if I say again that I feel like a loser or that I want to be dead.” Then I feel I can’t speak my mind. So again, it comes back to making it more OK to talk about how people are feeling. In a public speaking setting, I want to do that without planting a seed in their head. That’s where I think it gets tricky.

There’s a lot of thinking out there that any talk about these issues needs to be wrapped in terms of hope and recovery. What do you think about that?

I have encountered that and have communicated to my psychologist how that creates a struggle for me. Between my book and the talks with NAMI, there’s a lot of emphasis on recovery, hopes, dreams, and I support that, because recovery is possible. However, there have been times when I have felt unable to express how I really feel, whether that be on Twitter or in public speaking engagements, because I don’t want … I don’t want people to be let down to learn that I’m not entirety cured, which is not going to happen to any of us. It’s human to struggle. It’s a sign of strength. My experience has been, people put me up on a pedestal. There’s a happy ending to the book, yes, there’s a powerful ending. But that’s not always going to be the case. And if you’re on a pedestal, it’s easy to be knocked off.

I have shared some of the struggles I continue to have and have lost some fan base: “Oh, that person’s not perfect after all. They’re still having problems.” In the NAMI format or on my own, I certainly don’t want to leave an audience saying, “Well, that’s depressing, he still has suicidal thoughts.” Recovery is a journey, not a destination. And for me, it’s particularly true. I’m on that journey all the time. I sometimes have suicidal thoughts that cause me to retreat from social media and other things. And sometimes I don’t have those thoughts and still retreat. If I’m engulfed by that thinking, then I feel like a hypocrite, sharing this rah-rah story with a happy ending, when it’s a struggle for me to look put together and not disheveled and sad while presenting this story. It’s a very delicate balance, I think. When mental health symptoms are more severe, I need to express that to an audience but also make sure the message gets heard that hope is there. A cure might not be possible, but I can continue to improve. So that’s the message I try to leave the audience with.

You mention that there’s no possibility of a cure or of getting better for good. Where did that idea come from?

Well, as of yet, we don’t have a cure for dystonia. So I have to prepare myself to live with symptoms for the rest of my life. The dystonia itself is due to brain damage, and that too is permanent. Likewise, there is no “cure” for mental illness. It can be managed, and I can hope for better days, but much like with addiction I have to remember that those demons are still there. If I go about life thinking that “I’m all better,” then those demons may be quicker to resurface.

Do you see any parallels between the fight for gay and transgender rights and the emergence of the voices of people who’ve had suicidal thinking?

I think there are a lot of parallels. For a long time, the voices of LGBT folk and folks with suicidal thinking have been silenced by a blanket of stigma. The expectation is that you not talk about it. For the gay community, this was reflected in the “Don’t ask, Don’t tell” policy that our military had in place. That same message, despite not having a name, has been in place for a long time with respect to suicidal thinking. The expectation is to not tell anyone about it, at least not friends or family. This sort of forced secrecy only serves to make one feel isolated and alone. Bringing these voices out of the darkness promotes healthy dialogue. It also promotes change, in both cultural perception and in policy.

What else would you like to do? Another book? A talk show?

Well, if Ellen would like to hand over her talk show, I probably would take it. Heck, I’d settle for being a guest! But seriously, I’m going to be returning for grad school to pursue my master of fine arts in creative writing. That will give me an opportunity to work more on my second book. But since my partner and I separated, I’ve been working two jobs, despite doctors telling me not to work at all. I have had to do it to keep a roof over my head and pay medical bills. It leaves very little time to write, though, and in that sense I feel like life is passing me by because I’m not engaged in the activity that I know I’m here on earth to do. How much longer I can continue working, I don’t know, but I know my heart is in writing and speaking and teaching. So an MFA is in the forefront of my mind. I need to once again make time to write. In an academic setting, you’re not so isolated as a writer. I believe that pursuing my MFA will allow me time to write my second book and also get the credentials I need to teach creative writing, to help others express their own stories.

Who else are you? You have a lot going on.

Boy, that is a really tough question, to be honest. Are you asking in terms of, “I like cats, I like pancakes?”

Sure. Most people actually tell me about dogs.

A lot of people would tell you I am a pancake connoisseur. No butter, lots of syrup. It’s a weakness of mine. So is ice cream. I love ice cream. And cats. I have one cat of my own, and he’s my closest companion.

I guess I like to see myself as a champion of the people. Pretty much everything I do, both for paid work and in the volunteer work I do, in the races I might run, I always feel what I’m here to do is give back to others. By doing so, I’m better able to help myself. If I can reach others, it’s the best gift of all. I’m not a material person fixated on income, the possessions I have. For me, being rich is giving back. In that sense, I consider myself a very wealthy man.

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