“And on the worst days
When it feels like life weighs ten thousand tons
She's got her cowboy boots and car keys on the
bedstand
So she can always run
She can get up, shower, and in half an hour she'll
be gone”
As some of you know, I
just finished attending the Teradata Partners conference in Anaheim. I call it
spring break for nerds but it's always a great time of learning new things and
re-connecting with colleagues from across my almost 20 years in the data and
analytics field. Oh and there's a fair amount of fun. I've been on the
planning committee for the conference for the last 4 years and this was my last
conference as a committee member. It was bittersweet.
Last year I was the
president so I gave a 20-minute keynote in Monday's general session and was
emcee for the closing general session on Wednesday. The highlights included
telling the story of some good work, meeting football commentator Herm Edwards,
and wearing a yellow spandex Kill Bill suit and, later, my cycling kit in front
of 3,000 of my closest friends. I had numerous people stop me this year
to tell me how much they enjoyed my time on the stage last year. (I just realized I never wrote about that here...sorry.)
While I wasn't on the big
stage this year, I did present with Dean Furness, a colleague who works at
Wells Fargo in Des Moines. Dean and I met when I went to speak at a
professional development day at Wells Fargo in December 2011. He also presented
and we became fast friends at a dinner the night before. At the time, he was working with a former colleague and volleyball partner, and friend David Brenner. We talked about the unique experience of being David's friend and colleague. :)
Seven days after we met,
Dean was in an accident at his family farm—an 1,800-pound hay bale rolled off
his front loader and crushed him underneath.
It severed his spine and he’s now paralyzed from the chest down. But, through a lot of faith, support and hard
work, he got back to work faster than anyone predicted--including the Social
Security admin who came after him to return his disability payments because he
obviously couldn’t have been disabled since he came back so quickly. Ten months later, he presented at the Partners
conference in October 2012 and I had the pleasure of introducing him.
Now, those of you who have
been around a while may recognize that October 2012 was when I first realized I
was sick. While packing for the Teradata
conference that year, I had to go buy a new pair of pants because my jeans wouldn’t
button, even though I hadn’t gained weight.
And some of the pictures from the conference show the slight signs of my
facial edema. Hmmmm?
Well, we know how that
turned out. Dean’s triumphant return coincided with the
beginning of my decline but, like Dean, through faith, support and hard work
I’ve made it back, too. So Dean and I
decided to do a session that talked about how people can use business
measurement constructs to help hem “up their average.” The title was “Curve Busters: Looking for a
Dare to be Great Situation.”
One thing Dean noted, as
he rolled across the stage in his wheelchair, was that people look at him and
automatically know he’s been permanently affected by his experience. It’s not obvious when someone looks at
me. But I have been permanently affected,
too. And lately, it’s been really
weighing on me creating this grating, and at times overwhelming, level of
frustration. I just didn’t know what was
frustrating me but it was a consistent feeling.
On Thursday, after the
conference was over, I went up to LA and had dinner with some dear friends. They’re facing their own health challenges
that are impacting their ability to have a life that is as fulfilling as they’d
like. We talked about the struggle of
keeping it together through the good days and the bad days.
After dinner, I went, by
myself, to see one of my new favorite performers, Frank Turner at a small
theater with a capacity of about 1,500 people.
It was a great show and a great crowd and well worth the 45-minute drive
back to Anaheim at 11:30. The show was a
big sing along and as he played the song “I Am Disappeared” (which I hadn’t
listened to before), snippets of the lyrics just struck me and I had moment of
catharsis and epiphany.
“Of people wrapped up tight in the things that will kill them (my disease)
Of being trapped in a lift
plunging straight to the bottom (if I relapse)
Of open seas and ways of
life we've forgotten (of being able to perform mentally and physically, and not worrying about the disease and it's complications)
I keep having dreams” (of
the time before I was sick)
“She woke up screaming in
the middle of the night
Terrified of her own
insides” (of the chromosomal defect that I have that is the worst factor for
long-term survival)
“And on the worst days
When it feels like life
weighs ten thousand tons
She's got her cowboy boots
and car keys on the bedstand
So she can always run
She can get up, shower,
and in half an hour she'll be gone”
“I keep having dreams of
things I need to do, And waking up but not following through” (I am so
distracted, I think that’s why I stay busy doing so many things)
“And come morning
I am disappeared
Just an imprint on the
bedsheets
I'm by the roadside with
my thumb out”
I’ve had many days where I
felt like I wanted to run away, just get in the car and drive far, far
away. There are days when the pressure
of living with this disease, dealing with known and possible organ impact,
maintaining a career, trying to have a normal life, dealing with challenges at work blah, blah, blah are like
a crushing weight on me. It’s not a lot
of overwhelming, attention-grabbing thoughts or even an acute emotional
reaction. Its just there are times where
I feel like I’m trudging along wearing a 100-pound backpack. Maybe not ten thousand tons, not
debilitating, just a constant heavy presence.
I feel alone so much of
the time, even when I’m around friends, family and colleagues. It struck me that it wasn't a coincidence that I had this catharsis alone in the middle of a jam packed room. I’m alone in this struggle no matter how many
people I know that love me and care about me.
And it’s made me hyper-sensitive to anything that I think contributes to
that sense of separation. Honestly, there are fleeting moments when I wonder why I'm alive, is what I'm living now worth all the work to get it and, if I relapse, worth all the future work to keep it. I talk myself out of it pretty quickly, but it happens occasionally.
When I feel like I want to
run away, I realize that there’s nowhere to run to get away from this. Dealing with this disease is the definition
of a “fact of life” for me…barring some significant and unexpected medical
advances, I will have to deal with this
as long as I’m alive.
From what I read, what I’m
dealing with isn’t uncommon for cancer survivors. I read an article in Psychology Today
entitled “The
New Cancer Survivors” noted this—
And as more and more people are living with cancer as a chronic manageable condition, often outlasting the crushing prognosis that the disease will cut their life short, the psychological nature of their situation becomes clearer. Theirs is a hyper-real, intensified state of existence in the liminal space between being terminal and cured. In many cases, after believing that their death was imminent and coming to terms with that fact in whatever way they could, they find themselves instead navigating a new and wildly uncharted reality. Their lives, unnervingly interrupted, are resumed in a form that is somewhat familiar but permanently altered.
So I continue on,
permanently altered, navigating this uncharted reality. I have come to terms with death. I'm not afraid for me and, as much as I want to be around for Al, Amy, Claire and all my other friends and loved ones, I trust that God will provide for them what I might have. It's not a fear of death that weighs on me, but a nagging question of what should my life look like and how do I get past this sense of isolation? I think that's what drives my desire to run away..."If I'm going to feel alone, well then I'll just BE alone."
But, as my buddy Frank Turner says in one of my favorite songs “We can get better, because we’re not dead yet.” So, I'm not dead...I'll try to get better.
But, as my buddy Frank Turner says in one of my favorite songs “We can get better, because we’re not dead yet.” So, I'm not dead...I'll try to get better.
Thanks, Frank!
"I Am
Disappeared"
I keep having dreams
Of pioneers and pirate
ships and Bob Dylan
Of people wrapped up tight
in the things that will kill them
Of being trapped in a lift
plunging straight to the bottom
Of open seas and ways of
life we've forgotten
I keep having dreams
Amy worked in a bar in
Exeter
I went back to her house
and I slept beside her
She woke up screaming in
the middle of the night
Terrified of her own
insides
Dreams of pirate ships and
Patty Hearst
Breaking through a life
over-rehearsed
She can't remember which
came first
The house, the home, or
the terrible thirst
She keeps having dreams
And on the worst days
When it feels like life
weighs ten thousand tons
She's got her cowboy boots
and car keys on the bedstand
So she can always run
She can get up, shower,
and in half an hour she'll be gone
I keep having dreams of
things I need to do
And waking up but not
following through
But it feels like I
haven't slept at all
When I wake to a silence
and she's facing the wall
Posters of Dylan and of Hemingway
An antique compass for a
sailor's escape
She says you just can't
live this way
And I close my eyes and I
never say
I'm still having dreams
And on the worst days
When it feels like life
weighs ten thousand tons
I sleep with my passport
One eye on the back door
So I can always run
I can get up, shower, and
in half an hour I'll be gone
And come morning
I am disappeared
Just an imprint on the
bedsheets
I'm by the roadside with
my thumb out
A car pulls up, and Bob's
driving
So I climb in
We don't say a word
As we pull off into the
sunrise
And these rivers of tarmac
are like arteries across the country
We are blood cells alive
in the bloodstream
The beating heart of the
country
We are electric pulses
In the pathways of the
sleeping soul of the country
We are electric pulses
In the pathways of the
sleeping soul of the country
We are electric pulses
The sleeping soul of the
country
The sleeping soul of the
country
The sleeping soul of the
country
