by Susan
With recent events in the cycling world, we are being forced
to re-evaluate Lance Armstrong as an athlete and as a person. Do we need to also re-evaluate Lance as an
ass-kicking cancer survivor and founder and spokesperson for LIVESTRONG?
I’ve worked for LIVESTRONG as a volunteer and LIVESTRONG
grassroots leader for the past two years.
I’ve been a founding member and board member of the Colorado Cycling
Team Benefiting LIVESTRONG. Last April,
I retired from my job in the software business and announced to my colleagues
that I was going to devote my time and energy to LIVESTRONG. Why did I do this? Well, both my husband, George, and I are
cancer survivors. I was diagnosed with
breast cancer in 2003 and he with Hodgkin’s lymphoma in 2010. Although we both got “cured” by our teams of
doctors, our own strong wills, and sheer luck, the messages we’ve received from
LIVESTRONG have made a huge difference in our mental outlooks.
If you’ve never had cancer, it’s hard to understand what it
feels like to the person who hears those three dreaded words, “you have
cancer”. With those words, you can feel
the bottom dropping out of your world, and everything you think you knew comes
crashing down. There’s tremendous fear,
shock, and yes, anger. Why did this
happen to me? Anger: there
is no God because God wouldn’t have let me get cancer; my body sucks for getting cancer. Even betrayal: it’s
all a mistake – those results aren’t
mine they’re someone else’s, please, let it be anyone else but me. Then
you think maybe you did something to cause the cancer – I drank too much alcohol, I had the wrong diet, I didn’t exercise
enough, I let myself be exposed to toxic environments, I had fear or guilt
within my soul that erupted into cancer in my body.
When I was diagnosed with breast cancer in 2003 I hid it
from the people I worked with. I left
for tests and doctor appointments without telling anyone why; when I took off
for a month to have bi-lateral mastectomies I just told people that I needed a
month off for undisclosed surgery. I
was ashamed of my cancer diagnosis, ashamed of having my breasts removed, and I
thought that people at work would see me as sickly and weak and I’d never get a
promotion or an important project again.
I came back to work and acted like nothing had happened, even though my
whole outlook on life and my self-image had changed. I went from thinking of myself as an active
and attractive young woman to being a damaged, scarred, middle aged woman who
thought she would never be attractive again. Most of all, I felt like a loser, which in our
culture is the greatest sin of all.
When my husband was diagnosed with Hodgkin’s lymphoma in
2010 attitudes toward cancer had changed dramatically. He told everyone who would listen what was
wrong with him, he kept a very public blog about all the details of his
diagnosis and treatment, he kept his position at his company and even got
promoted during the year that he was going through some very heavy duty chemo
treatments.
What happened between 2003 and 2010? I think that a large
part of these changes was due to Lance Armstrong and LIVESTRONG.
When I was going through my cancer diagnosis I read Lance
Armstrong’s book, It’s Not About the Bike, and reading about Lance’s
cancer journey helped to give me the courage to face my own possible
mortality. I thought, if Lance could do it, then I can do it. I used his story to show how I could get back
up and be active after my surgery, working through the chest pain of the
initial surgery and all the reconstructive surgeries, working through the brain
fog I felt from multiple general anesthetics, working through going to the gym
and wearing my t-shirt into the shower because I didn’t want anyone to see my
chest. I saw pictures of Lance looking like hell
after his multiple surgeries and chemo treatments, then going on to great
cycling achievements. This was at a time
when we were used to seeing cancer patients as skinny, bald people with big
hollows under their eyes who were just one step away from the grave. To see a healthy, fit Lance wearing the
yellow jersey in triumph gave a whole new meaning to survival. We could not only survive, we could thrive
and go on to great achievements.
People everywhere started wearing the yellow LIVESTRONG
wristbands as a show of support for cancer survivors – most of them either
because they or someone close to them had cancer. People started talking about their cancer
survivorship. LIVESTRONG held sports
events to raise money for cancer and they gave out roses to cancer
survivors. We were cool - we were on
Team Lance. Was this because Lance was
a seven time Tour de France winner?
Well, that was undeniably part of it.
He went from having cancer to being one of the most successful athletes
of our time. He hung out with
celebrities, he had access to the highest levels in government. He was a hero.
Let me say here that although Lance has been accused of
being an arrogant asshole with some kind of megalomanic complex by some sports
writers and fellow cyclists, he was never that way within the cancer
community. He was unfailingly generous
and kind with those who worked and volunteered for LIVESTRONG. He has opened up his home to LIVESTRONG
employees and volunteers, he gave a friend who needed a ride to a Team
LIVESTRONG event a lift on his private jet, he has smiled and shaken hands and
given support to countless cancer survivors who looked up to him. He has
given large amounts of his own money to help LIVESTRONG get going and has never
taken any kind of salary from the organization.
Within LIVESTRONG and among cancer survivors, Lance has been
a hero. There may have been some
unhealthy “cult of Lance” behavior, too – where people tried to get into his inner
circle or just be near him, or gave him undue worship.
Recently we have found out that Lance was not a hero in the
cycling community. There is now enough
evidence against him that it seems that in spite of his assertions of
innocence, he was involved with doping over a long period of time. While he was not the only one, he was
certainly influential due to his success and fame. If he had refused to dope, he probably would
have ended up in the middle of the peloton and would never have won the Tour de
France. Someone else who doped would
have and would now be stripped of their titles. Would Lance’s refusal to dope have changed
the environment of the tour and caused others to re-think their own doping, or
would it have just relegated him to obscurity where he had no influence? I guess we’ll never know.
There is a huge part of me that is heartbroken, sad, and
disappointed about all of this. I no
longer have a hero in Lance. Is that
good or bad? I’m old enough to know that
heroes don’t exist and aren’t really going to save us from anything – it’s up
to us to be our own heroes and to save ourselves. Still, it hurts. I’m angry too – how did it go on for so long,
and why now, after all these years, after Lance has retired from cycling and
has been spending most of his time working for LIVESTRONG, have these
allegations come home to roost? I’m
angry with Lance for lying to all of us and for putting me into this
position. I don’t want to spend my time
and energy being an apologist for Lance, and I don’t think that’s my job. Certainly he never asked for this – he’s a
big boy and he needs to get himself out of the mess he got himself into and
figure out what to do with the rest of his life.
I do want to spend my time helping others with cancer. I want
to give others the message that there is life after a cancer diagnosis, and
that they can be healthy, active, and happy during and after cancer
treatments. I want to tell other women
with breast cancer that they can be athletes; they can be sexual and
attractive. In LIVESTRONG I have found a caring community of people who are
passionate about helping cancer survivors.
There is so much heart and hard work within the organization that I am
in awe. I have found friendship and
camaraderie among the people I’ve met through LIVESTRONG. I remember at one of our leadership events I
was standing around with four other survivors and we were having a contest to
see who had the most gross and disgusting cancer treatments. We were each telling our worst nightmare
treatment stories, then laughing
about them, and saying, “Oh yeah? Well
you should hear what happened to me …..”
It was so healing, so cathartic, and
I realized that there was probably not another place in the world I
could have had that discussion with such total empathy and understanding.
So, the crazy thing is that today I started thinking about
Werner Erhard. Werner Erhard is a familiar name to all of us
baby-boomers, but for those who’ve never heard of him, he was a really popular
figure in the so-called “self-help” movement of the 1970s and 1980s in this
country. He was a self-taught former
salesman who created the transformational program known as “est”, or Erhard
Seminars Training. Thousands of people
went through the est training. The
training was a blend of Dale Carnegie positive thinking, Silva mind control,
and Zen Buddhist teachings. Kind of like
the precursor to ‘The Secret”. I went
through the est training in 1980, and I was really wrapped up in it for a
while. I felt that it had a lot to offer
and had made a tremendous difference in my outlook on life. The one part I was always uncomfortable with
was that Werner Erhard was such a charismatic leader that he was almost
regarded as a demi-god by people within the est organization. They attributed almost supernatural powers
to him (for example, I heard one story that Werner had caused himself to get a
tan overnight by just thinking about it).
In 1991 Werner retired from the est organization amid allegations of tax
fraud and sexual misconduct and disappeared to Russia for a while. After
he left, the est training found a second life as The Forum and then Landmark
training, but it never again had the almost religious fervor and high profile
media attention that it had while Werner was leading the organization. The problem is that when your organization is
defined by a charismatic leader and that leader falls, you have nothing to base
it on any more and it quickly loses its power.
I did a little research on Werner recently, and found that he
successfully refuted the allegations of tax fraud and sexual harassment, and
now continues to do some much lower profile leadership training and management
consulting in the United States.
However, he has never gone back to his former level of fame.
What does Werner Erhard have to do with Lance
Armstrong? Both have been charismatic
leaders who have rocketed their organizations to fame. Both started out in lowly circumstances and
ended up hanging out with celebrities.
Both took big falls. And both of
them were heroes of mine.
I remember when Werner Erhard got divorced from his second
wife and I was having my own relationship problems. I was really mad at him. I thought, “If he can’t even stay married
then why should I listen to any of his advice on relationships?” I had been listening to his tape on
Relationships in the cassette deck of my little orange hatchback car. I realized then that I was on my own – there
was no magic knowledge or 60-hour program that was going to get me through the
thorny patches of life. There was
nothing that was going to keep me from dealing with those tough circumstances
that define adulthood – rocky marriages, loss of people you love, death and
disease.
One thing I do know is that I have made many mistakes in my
life and I still have a lot to learn.
I’ll probably go on making mistakes and acting stupid until the day I
die. There are things that I’ve done
that I’m not proud of, things that, were they held up to public scrutiny would
definitely disqualify me from being anyone’s hero. I think most of us are in that boat; still,
we search for people who are better than we are, who have found “the secret”, who
somehow have transcended the ordinary lives of “quiet desperation” that Thoreau
wrote about. We put people on pedestals and then, when
they fall off, we feel angry and betrayed.
When I was helping my husband George through his grueling
stem cell transplant to fight Hodgkin’s, people asked how we ever got through
it. The answer is, we got up every day
and put one foot in front of the other and just thought about getting through
that day. And there was really no way
around this. As I told George, “the only
way out is through”. We learned to
embrace what our friend Josh Schwiesow, another Hodgkin’s survivor, calls the
principle of “One Fun Thing,” which means that you try to find one fun thing to
do every day, even if it’s something as simple as enjoying a nice cup of tea
with a friend or taking a walk around the block.
There’s actually some good news about Lance’s fall from
grace. The people at LIVESTRONG now get
to take ownership of the tremendous work that they’ve been doing. It’s really not about Lance – it’s about
George Florentine, and Rich Easton, and Steve Burns, and Tara Williams and Mike Dunkle and Meg Halford
and all the other local heroes who are doing what they can in the fight against
cancer.
In doing research on what happened to Werner Erhard, I found
some clips of him talking on You Tube.
Actually, he said a lot of great stuff.
One thing he said was “What you resist persists”, and he told us that if
you move from resisting something to first just letting it be and then finally
taking responsibility for it, it puts you in a position of power so that things
aren’t just “happening” to you. My
advice to Lance right now would be just to come clean and admit to everything
he did and take responsibility for it.
That would be healing for all of us.
Now, we in LIVESTRONG get to take responsibility to where
the organization goes from here. We, not
Lance, are LIVESTRONG. We get to take ownership of this huge task
and responsibility to help the 28 million cancer survivors in the world. Will LIVESTRONG survive without Lance? It’s up to us.
You're my hero, baby! Rock on! We will LIVESTRONG and help cancer survivors. It's not about Lance, it's not about the bike, it's about us - the 28 million people living with and battling cancer every day. Let's all live a long time, make a bunch of mistakes, learn from them, ride our bikes, take care of ourselves and our families. You know, the whole "don't be dumbass" thing. Works for me!
ReplyDeleteWow. Talk about a tear-jerker. Thank you for sharing your powerful thoughts and experiences Susan! I think that with people like you LIVESTRONG has a real chance of continuing its good work to encourage and support cancer survivors the world over.
ReplyDeleteAnother thought about Werner Erhard--and I agree that he had a lot of great things to say. But what happened to the Hunger Project? And to all the millions he made, on the backs of volunteers? Years ago I thought there was some idealism involved. Now I think he was just making lots of money, but the idealism made it easier for us to part with our money (and our time, if we were volunteers).
ReplyDelete