Personalizing Advocacy for Loved Ones

My mother will tell you I entered the world with “my voice fully engaged,” the politically correct term for “screaming at the top of my lungs.” I will tell you that I entered the world announcing my mission—advocacy. Over the years I have had many opportunities to describe and refine that mission. Why, then, did I internally stumble several weeks ago when a radio host asked me to define advocacy? Was it because I was still too raw to discuss it as it relates to my husband’s illness? Was it because I now realize this is an “evolving” definition? Was it because my definition has subtly changed?

The answer to all these questions is, “yes.” However, that still does not resolve for me the reasons for my tightening gut, the lack of air in the room, the anxiety behind my answer. Llewellyn just released my book on advocacy, Hospital Stay Handbook. Since Llewellyn published my book, I suppose I am “some kind of an expert” on this subject.

A recent Google search of the word “advocacy” produced 52,200,000 hits. However, I am but one voice that can still claim to be an expert. What made me one? 225 days in four different hospitals working with thousands of healthcare workers, watching hundreds of machines, and witnessing hundreds of interventions, all focused on keeping my husband alive and for which I was present twenty-four hours a day, seven days a week.

What I realized in this humbling epiphany is that:

• I am an expert only in my own form of advocacy;
  
• I know how to advocate only from my own frame of reference;
  
• I learned how to represent only my husband’s wishes.

• Would she want assertiveness? Only in a quiet, self-effacing way.
  
• Would she want volume? Only under your breath, in your head, or in your heart.
  
• What is the first thing she would say to you as take on this journey? Take care of yourself!

• Does she love Mom more? No.
  
• Is she as experienced as I in hospital-based advocacy? No.
  
• Will she “fight” any less hard? Absolutely not.

• I will now, once again, step “outside into nature many times” during the course any illness or injury requiring advocacy on behalf of my mother, “to clear not my head but my heart.”
• I will step aside and “allow” my sister the “front” position.
  
• I will honor my mother’s path through my sister’s heart and voice.