This is Not One of Those Stories

Dana Lesemann is a lawyer with the federal government in Washington, D.C. She has worked in national security law, cosumer protection law, cybersecurity and banking. She is the mother of an 11 year old son of whom she has sole custody.  Lesemann was diagnosed in 2011 at the age of 45.  She is about to try her first case since being diagnosed with Parkinson's, an experience she hopes to write about --- after a vacation.  

Lesemann can be contacted at danalesemann@mac.com

At every Parkinson’s conference, support group or other get together there are couples who talk about how the diagnosis and aftermath strengthened their relationship. I like those stories. They make me feel … good. This is not one of those stories.

I was diagnosed four years ago. It would not be fair or true to say that the diagnosis wrecked my marriage.  No, the diagnosis was more like the water that found all the cracks in the foundation of our marriage.  It seeped in everywhere, took over everything. My husband did not want me to tell anyone about my Parkinson’s – not our then 9 year old son, my family, our friends, or my co-workers. “They’ll never look at you the same way again,” he said.

I tried at first. But denying my Parkinson’s allowed it to take over my life.  I spent more time and energy hiding it than living.

I’m can’t say that having Parkinson’s has been a good thing. But my diagnosis led to a paradigm shift:  I realized my marriage was not working and it was not going to get any better. His reaction to the PD was his reaction to life: Duck and cover.  I’m the opposite: Grab and go.  This was the final crossroad.  I had to get out.  If I was going to live with Parkinson’s, I was not going to let it rule me. Life is too short to be miserable and living in an unhappy marriage was not the way to do it. 

Telling my son I had Parkinson’s was not hard; to him Mom is Mom. Although he’s made it clear he would rather I play paintball with him, I’ve also told him that it’s not necessarily the PD that’s kept me from shooting exploding pellets full of paint with him. PD is the only thing he’s never really asked questions about – Islamic fundamentalism, the electoral college, the demotion of Pluto as a planet: questions all. PD: not a one.  They’ll come when they need to. 

Walking out of my house with my son to a rented apartment was probably the hardest thing I have done. I left the certainty of being miserable with someone for the uncertainty of being alone. People I knew with PD – especially women – thought I was crazy. The fear of being old, sick and alone is a powerful one, and it keeps many people in unhappy relationships.

I am a lawyer; I assumed that I would be able to settle the divorce and custody amicably.  I still have trouble believing how wrong I was.  My husband first sued me for full custody of our son, claiming I was incapable of raising him because of the PD – even though I was working full time as a lawyer for the federal government.  He simultaneously claimed that I was a workaholic who did not have enough time to devote to raising our son if I had custody of him. Even for a lawyer that’s a tough tightrope to walk.

We settled custody on the eve of trial, after all my medical records were subpoenaed, and I was questioned about them and everything else under the sun. I got legal custody and the authority to make decisions about our son’s education and health. His father was supposed to see him every other weekend.  Sometimes months would go by without my son seeing his father. I would joke that single parenting is not for the faint of heart or the low of dopamine. 

I am lucky to have a tremendous support system: friends, family, and co-workers who helped me through my decision to move out, kept me going through the divorce, helped my son in ways that I could not, pitched in with last minute child care on holidays, said the right thing at the right time, or said nothing and just listened.

And dopamine or no, I am a single parent, and we are on an unknown path. And it is so much better than being trapped by fear.