Erika Nielsen, in her own words about living with bipolar disorder
Erika Nielsen is one of the artists participating at THESE ARE THEIR STORIES. We asked her a couple of questions and she answered them so thoroughly we have decided to publish them unedited. We hope you find her insights helpful!
What can we expect to hear you play on April 4th?
I will perform a selection of movements from the classic and timeless Solo Cello Suites by J.S. Bach. The works evoke everything from a sense of peace, to looking inward, to pure joy. On a personal note, the Cello Suites have always been a sacred healing place where I can turn, musically, and I know many listeners feel the same way.
How would you say living with bipolar disorder affects your life on a day to day basis?
Living with bipolar disorder affects every waking and sleeping moment of my day. It is a full-time job, but I’m now used to my routines and prioritizing my needs.
During the day, I have to be careful to manage my stress levels. I schedule rest points throughout my day, and week. When possible, I schedule at least a 15 minute break between activities, I avoid rushing, and try to leave adequate time for meals, making sure I eat well, and on time. I love to work, so this has truly been a habit I’ve had to cultivate! I also need to limit alcohol to 1 drink, and only if it’s early in the evening.
Bedtime is serious business. It begins with at least an hour or more to wind-down, then making sure I’m near my bed when I take my medication, followed by a 40 minute ‘count down’ to sleep. I use blackout curtains, wear a sleep mask, and unplug all electronics to ensure the best possible sleep I can get. This can be challenging with late concerts, but I make it work. I do not schedule rehearsals or appointments before 10am so I can be sure to get the rest I need to function at my best.
My need for sleep is beyond the preferences of someone who might not be a “morning person,” and it is not a luxury. For a person with bipolar, sleep is one of the medicines that our brains require for treatment and management. (This is actually true for everyone, but not everyone can, or chooses to prioritize sleep.) I have also noticed a huge stigma against sleeping adequately as part of treatment, and I hope to help change that, too.
Does it influence your playing? If so, how?
There are many ways that living with bipolar disorder has influenced my playing.
When I lived with untreated bipolar disorder (before I knew I had it), there is no question that it affected my playing negatively, beyond my manic and depressive episodes. I suffered from major performance anxiety, and destructive and ruminating thoughts about my worthiness and ability. I experienced auditory hallucinations and blanking out, problems focusing, suicidal thoughts, and extreme impatience and irritability. Sleeping poorly made all of the above even worse, and vice-versa. I thought it was all a part of being a performer and artist, or a sign that I didn’t deserve to be one.
I didn’t realize how exhausting it was to live in my brain until I finally got a diagnosis and found the right treatment. Interestingly, people with bipolar disorder often also suffer from major anxiety and ADHD, and so did I. I was working extremely hard, all the time to cope with and hide my symptoms, and I am so relieved I received an accurate diagnosis. Amazingly, treating my bipolar also treated the symptoms that affected my playing.
In contrast, living with treated bipolar disorder turned nearly all of the above symptoms on their head. I can now perform with more focus and ease than ever, allowing my true abilities to shine. I still feel nervousness and excitement, but now it is in proportion and manageable, and I can sometimes even use it to my advantage. My thoughts are now organized and non-toxic, as if the volume dial was turned down 40% to a tolerable level. I am no longer scattered, and I can focus, and little things don’t distract or bother me anymore. I never knew it was possible to feel this balanced–I feel like I got my mind back.
I do believe that having a condition where I have experienced every extreme of the mood spectrum from manic psychosis to despair, gives me extra insight into the essence and heart of what makes music move people. I feel it so intensely, even though my illness is treated. Knowing the scary sides of bipolar disorder in some ways magnifies my artistic and creative sense, and gives me a really deep empathy in understanding where a composer or other artist is coming from in their intentions.
I refuse to glorify or romanticize my mental illness, but I can appreciate the insights it has given me. As I wrote in the article Your Mania is Not Your Creativity, having bipolar disorder is not what makes me an artist, or a creative being. If anything, I’m more productive, effective, and expressive than ever because bipolar is no longer holding me back!
WHY did you decide to share your experience, in a blog, a book, live?
When I was first diagnosed, I was beyond frightened. I was in shock, and felt isolated, humiliated, ashamed, and alone. As I madly researched to learn more about my condition, I stumbled across a graphic memoir written by cartoonist Ellen Forney called Marbles: Mania, Depression, Michelangelo, and Me. Reading about a fellow artist’s experience with bipolar disorder, captured beautifully in her illustrations, was extremely powerful. This illness was real, and someone like me had been there, too. It gave me hope.
Later on, I was sketching out a chronology of what had happened to me to make sense of it all. I saw a narrative appear, including the many steps I was taking toward recovery. I realized that sharing my own story might have the same effect on someone else that Ellen’s book had had on me. I knew right then that I had a book to write.
Creating my blog www.soundmindbook.com felt like a safe first step in “coming out” and writing about my mental illness. I was adamant that the blog was not a diary, but well-crafted mental health articles intended to help others, based on what I had learned. Many of those posts were also shared on BPhope.com, the online magazine for people with bipolar.
Was it a difficult decision?
Mental health, and erasing the stigma of mental illness is such important and timely topic. As an educator, the decision to share my experience to help others was unquestionable, but I needed to process through every potential risk so I could feel safe sharing, and trust that I was truly doing a good deed.
A lot of the risks I imagined were part of the growing pains in my coming to terms with having bipolar itself. I was nervous, naturally, about how some family members would react. After I got over that hurdle, some of the biggest fears I had about being open about my condition, (and still have a little, to some extent), is that potential colleagues might make unfair and untrue assumptions, and might be unwilling to work with me. The same goes for parents of students, even though I am a loving, skilled, and competent teacher with over 15 years of experience. I was very discreet when I first published my blog and when I started writing Sound Mind.
I’ll never know what I don’t know, but so far the opposite has been true: I have had so many colleagues, friends and students tell me that what I am doing is an inspiration, and many have opened up and shared their own struggles with me, which has brought us closer. Those who already know and work with me know I am a warm, positive, generous, and empathetic person who is superlatively balanced and organized. It’s hard to think of, but if anyone assumes otherwise, I probably don’t need them in my life. My illness is no different from managing a chronic heart condition or diabetes, and I hope that eventually, all others see it that way, too.
HOW have people around you reacted?
When my blog launched, I received an overwhelming outpouring of support from friends, family, and strangers near and far. Many also shared with me how my articles had helped them personally, or had helped a colleague or peer. When that happened, I knew was on the right track.
When I later gathered the strength to share that I had a book on the way, I was even more blown away by the overall reaction. The support I have received has given me the courage to believe that sharing this story and the steps I took toward recovery will truly benefit others, and that maybe it is actually possible to be safely “out” with this condition. I can’t even imagine trying to hide any more!
Yes, it’s been positive so far, but I was recently joking with my mom that I’ll also be celebrating my first troll, when they appear!
WHAT should people who have no experience with bipolar disorder consider when talking to or being friends with someone who does?
I think a big thing to consider is respecting a person with bipolar disorder’s needs surrounding their routine or sleep needs when they tell you about them, and even if they don’t.
For example, not giving the person a hard time when they need to leave a party early to go to bed, or goading them on to drink more alcohol when it’s a trigger for them. Most people in general are pretty good about respecting others’ needs, but you’d be surprised at how prevalent peer pressure can still be among adults.
Why are you participating in the High Notes Avante event?
I’ve been admiring the work that High Notes Avante has been doing for the past couple of years, which has included performances by a number of my musician friends and colleagues, Frank Horvat, Giles Tomkins and Michael Bridge. Naturally, I was inspired, and reached out to Ingrid to see how I can help support the movement and message.
I hope that sharing my story and my music with the High Notes Avante community will help raise even more awareness and contribute to erasing stigma towards those living with a mental health condition, and show that it is possible to live a full and balanced life, and even thrive with a mental illness.
For tickets call 905.787.8811 or visit rhcpa.ca. Regular tickets are $35 while $60 tickets include a complementary beverage and a $25 tax receipt. There are less than 150 tickets so better get yours today! Dan Hill and Luba Goy are also participating.
HIGH NOTES AVANTE is a registered charity (827049388rr0001) using artistic expression to inspire, give hope and connect those touched by mental illness. Our objectives include offering art productions directed towards the alleviation of loneliness and isolation as well as reducing any associated stigma. Our dream is to one day produce “THE” mental health concert that will be accessible from coast to coast in Canada and give hope to everyone touched by mental illness, no matter where they live. Read more at www.highnotesavante.ca