Wednesday, October 31, 2012

The 17th Mile: Vulnerability, Founder’s Syndrome and My Own Mental Illness

For those of you who know me, you know I am a slow and steady marathon maniac. For the past decade, I run a couple of marathons a year trying to someday run a marathon in all 50 states. For me marathoning is a metaphor for my life: committing to audacious adventures and figuring out how to get there step by step, finding dedicated partners to jog along with me, and riding the adrenaline rush when crossing the finish line. The other metaphor, which has been a focus of my year, is mile 17.

Photo by D. H. Parks Courtesy of Flickr Creative Commons
At mile 17, I lose hope. I am a long way in with a long way to go. My feet feel like someone is setting a torch to them, my stomach is doing back flips, and my brain is shutting down lobe by lobe. I go into a very dark place inside myself, put my head down and shuffle along, talking myself into one more mile. And then another. I hate this part of the race. For me, this year – with all of the accomplishments and celebrating – has had many 17th miles.

It started last February when a series of experiences brought me to my knees. First, I had dental surgery that left me unable to eat anything but mush for over a month. The lack of food made me irritable, and I started losing weight. Then I had to let go of an employee I cared about, and the transition filled me with worry – for her safety and for the organization. My computer crashed slowly over about four weeks, and I lost the ability to communicate effectively and could no longer rely on this key instrument in critical moments like public presentations.  Then my dog suffered a spinal cord stroke that left him completely paralyzed from the rib cage to the hindquarters. We considered putting him down, but decided to rehabilitate him instead – a costly decision with a very uncertain outcome.

As these stressors coupled with some unnerving family issues added their weight to my already weakened state, it felt as if my brain was being hijacked. I have always known that I was vulnerable to mental illness – it runs in my genes – and wondered when it would be my turn. I used to say, “I am on the bipolar spectrum” because I have a chronic case of hypomania but had never been depressed. During these 9 weeks last Spring that changed. First, I couldn't sleep. I would spend night after night tossing and turning. Then the anxiety got worse, and I just couldn't stay in the bed because I was so agitated like ants crawling in my skin.  I knew what was happening but was completely unable to get on top of it, even with all the best coping strategies at my disposal. Soon, I found I couldn't eat at all. I have a vivid memory of sitting alone at a Thai restaurant while I was traveling to a conference in Atlanta. I knew I had to eat to have strength for my presentation, but I just couldn't swallow and sat there trying to choke down a few pieces of tofu in broth filled with sadness. During these weeks, my mind was consumed with catastrophic thoughts about my family and the future of the Carson J Spencer Foundation. I would be driving to work and find myself terrified of getting into an accident, and as a result found I really had to really focus on my breathing to get from one place to another.

Putting the pieces back together
Photo by Leopard Print courtesy of  Flickr Creative commons

Then two things happened. My doctor give me some medication to sleep and control my anxiety, and I went to the American Association of Suicidology annual conference where I was able to get a better sense of perspective on what I brought to the world that had value. I felt love from my colleagues, valued for my expertise, and connected to something bigger than myself. The tide of the depression started to ebb out of my experience, and now, I am humbled to acknowledge that like so many I have worked to help, I too have a mental illness.

Like others with bipolar, I love my hypomania. I love having tons of energy, creative ideas, and unstoppable drive. The more life I live, however, the more I realize that others are not as keen on this state of being. I exhaust and frustrate people on a regular basis for trying to cram too much in too short a period of time, for living in an adrenaline-filled world of pressing deadlines, and for my lack of understanding of the effect I have on others. In the past, confrontations regarding my behavior often led to defensive reactions, but now, I can no longer deny, I must find a better way.

For me and many others, failure is so hard. I have always put a lot of effort into achieving – one of my blessings and curses. This year during my episode of depression and beyond, I found myself teetering up on the high wire, completely consumed with fear of failure. How could I not succeed doing something I feel I was destined to do, something my entire history has prepared me for, something I am doing in honor of my deceased beloved brother. My drive to overcome this fear snowballed into panic and has rippled through my organization like a cancer. Through many discussions, confrontations and reflections, I have come to accept that I have a classic case of Founder’s Syndrome

Here is how one author describes it:

“When someone with passion and commitment creates and builds a strong association, members and society benefit. But these founders can turn into their own worst enemies when they refuse to recognize that their organization has "outgrown" them, needing leadership skills the founder does not have or refuses to develop. The result? A nasty case of "founder's syndrome" or "founderitis." The cure? A tricky mixture of growth opportunities, board involvement, and a firm delivery method.” ~Maryll Kleibrink, The Center for Association Leadership, December 2004 from

Last week, I had the great privilege to hear Dr. Brene Brown speak at the Women’s Success Forum in 
Denver. For those of you who have watched her viral TED video (, you know she is a researcher on the area of vulnerability. At this forum, she talked about how we can't opt out of vulnerability - uncertainty, risk and emotional exposure and how daring greatly is about understanding vulnerability as courage.

This week I started something new: Executive Coaching. I am excited about facing these deficits and becoming a better me. I know the weeks ahead will have me taking a long look at difficult things, and I am ready.

Today, I am grateful for all of this. I am thankful for the courage Dr. Brown has given me to stand imperfectly, accept my challenges and ask for forgiveness from those I have affected. I appreciate my doctor, my medication, and my support system. I value all those who have confronted me in a respectful and solution-oriented way. I am looking forward to learning and changing, knowing that it won’t be easy, but the benefits will be magnificent.  Now I feel like I am somewhere at mile 22 – it’s still a tough road but there in the distance is the threshold of hope.

Photo by Dru Broomfield courtesy of Flickr Creative Commons


  1. Sally, thank you for sharing such a raw view of yourself. I find so many familiar places and feelings in your words.


    1. Scott -- you are a true warrior in this fight with me. So honored to walk with you.

  2. My Dear Friend & Sister, I love you more than ever because of your honesty about yourself. We, the mentally ill need to know that even in the darkest moments when we feel unlovable we are still loved and cared about. You will always be my sister in love. You and I have walked together through darkness and dazzling light. I am 100's of miles away and I often forget that I am loved by anyone. I miss my former life and I hope with all that is within me that I will find my place in this new world. I move forward everyday numbly hoping the fire within will rise again, but to no avail. The tiny flame struggles to stay lit in the raging storm with torrents of pain splashing its depression towards my flickering hope. No one one cares. I need to believe by myself in myself and it's so lonely here.

    1. You are always my sister and friend. You are learning important things on your journey down there to take you to the next chapter of your work. The tiny flame needs your care. I am always here for you. We lean on each other.