Hi, friends. When I last wrote in August, I promised that once life settled down, I would explain why this story has tumbled out in such a haphazard manner. If you are new to either “Plan B” or “Embracing it” the whole truth is that for the past 18 months we have been surprised by what seems to be a deluge of unwelcome storms. Not that anyone is prepared for bad news…it always stuns the recipient into an unexpected state of bewilderment. I’ve read somewhere that “memory jolts awake with trauma’s electricity.” No one declares that “now would be the perfect time for a crisis.” And I would be lying if I said that “last year was the perfect time for a crisis.”
In order to catch you up, I have to back up a little.
Eighteen months ago, our little family was enjoying a period of calm after what felt like a pretty big storm. I had settled into a new normal and had become comfortable with my stripes. Thanks to a friend’s referral and some fierce advocating, a team at NIH had untangled my issues: I didn’t have an immune deficiency and an advanced liver disease. I had an immune deficiency and two DIFFERENT, but less advanced, liver diseases. On top of lyme. We began to understand how each one affected me separately, but more importantly, how each one affects the other,
and why no one to date had been able to explain how my puzzle fits together. I was making progress…my liver function quickly improved with new medication and less chardonnay, which in turn restored my energy. And gradually the dire diagnoses seemed much less….dire.
Lifted by the progress I’d made and the knowledge I had gathered, I began
t elling the whole world blogging out it; partially to process the experience, but also to share information that seemed to be tucked in corners, hidden in password protected chat rooms, and out of sight of traditional medicine and nervous googlers. We
are shaped by one another’s stories, and I knew that there were others out there, with similar symptoms and no explanations. My own answers were delivered by my doctors…but I had landed in their waiting rooms because of late night research, password protected chat rooms, and other advocates who were online telling stories that gave me pause and rang familiar, and armed me with the information I needed to get in the door.
The tribe around me kept us fed and loved and gave me the courage to march into plan B with an open heart, looking for the graces that came out of the brokenness, finding joy to soak the cracked spaces. I was the recipient of lavish care – and have volumes to write about how my people showed up to stand with me in the rain…but later.
So now, I think I’ve caught you up….by the fall of 2016 I was okay with where I was health-wise, and was even well enough to jump into action when Jim and I needed to make an abrupt and necessary career change. We had talked for years about running our own firm. We had wondered what type of company we could create if we combined his ability to write, motivate, and quickly synthesize information with my ability to triage, plan, and draw teams together. Plus, our obvious humility had to be magnetic.
What we didn’t anticipate was the need to test drive that dream so quickly, but we did – and it’s working. We are building a business by helping others tell their stories. We are serving clients who match our values, and we are doing it the way we had dreamed about – with humor, and, obviously, that humility, and a commitment to continue to listen until we understand the stories that need to be told.
But this story is not about our business. It’s about our life.
While our new venture was gaining momentum, it became obvious that Jim was not feeling well. We had each separately wondered why he was suddenly battling one new ailment after another, especially because he had always been our family’s version of “Iron Man.” Jim could deflect all manner of viruses, once escaping a bout of food poisoning that had taken down 90% of his father’s book signing party. Jim could leap over stomach flu and deflect bronchitis while the rest of us would be DYING from a simple virus. He would feel a cold coming on, go for a run, and be done with it. But once we were working together every day, we could no longer not say out loud that something was wrong.
I think that we perhaps gave ourselves too much credit for the way we jumped into action when we formed our company, for modeling flexibility, and showing our kids how to react to a curve ball. Maybe we lingered too much on our resilience, and missed some cues that could have been helpful. Hindsight has a great reputation for self-analysis but if we had been able to predict the future and peer into the corner into 2017, I think we would have asked for door number 2. Or plan C. Or, “Okay, give that one to me, but please, not to my kid.” And we certainly would not have said, “What the hell….give it to all of us!”
The only knowledge that hindsight now confirms is that was we were very, very drained when things got worse. We had necessarily poured our hearts and energy into building a new business. We had accepted the limitations of my health. But whatever is the opposite of resilient..that’s what we were. I’ve come to learn that if you don’t really deal with the storms as they come, you will carry them around forever.
I have more to tell, but this is getting depressing and by now you need a dose of a baby goat in pajamas snuggling a pig.
More tomorrow. So much love,