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. Since Llewellyn published my book, Hospital Stay Handbook, 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.

While all these "opportunities" (that I wouldn't wish on my worst enemy…) to "practice" advocacy (because it IS about practice, not perfection…) give me a "voice" in the community of hospital advocacy, it is but a single voice. The reality is, we all need to find our "own" voice. We also need to define the type and extent to which we will serve as an advocate for another. And, for each person, for each situation for each person, the picture of advocacy will look different.

Being an advocate is hard enough, and then we are asked to silence our own fears and desires about outcome on behalf of an injured or ill person. During the course of seven and one-half months of full-time, intensive advocacy on behalf of my catastrophically ill husband, I left the hospital and went outside into nature many times, this done to clear not my head but my heart. My heart moved me to speak and act occasionally in ways that may not have produced the desired outcome. As I have become more distant, and hopefully, more objective, about our experience, I have come to realize that there is another component to advocacy, that of acting not only on behalf of another's wishes but acting in a manner that honors that person's path through the world.

What does this mean? What is the difference in acting as an advocate on behalf of my husband and acting as an advocate on behalf of my mother, the probable next great advocacy challenge I will face (and one that we all have or will face over our lifetime)?

My husband is an attorney. Does that give you some perspective regarding his path through life? His voice has always been fully engaged in an assertive manner on behalf of others. Therefore, my natural inclination to adopt this same path in advocating on his behalf did, in fact, honor him, both in content as well as methodology. His life's mission has been to "fight" on behalf of those others and he has never been afraid to use his voice and power to achieve this outcome. He and I also share a belief system that is "outside" mainstream America.

My mother is a very different human being. She is quiet, kind, self-sacrificing and inwardly focused, except with her family. What does this suggest to you regarding the method or manner in which I might advocate on her behalf?

• 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!

I realize it was my mother's voice I heard in my head regarding this issue as I wrote the first and last chapters of Hospital Stay Handbook, both of which are titled "Take Care of Yourself."

So, what does this mean for all of us regarding our role as an advocate? In my case, it may mean that my sister is better suited to act on behalf of my mother, with me coaching her behind the scenes. Why? My sister is much more temperamentally similar to my mother than I, and shares my mother's Christian spiritual practice.

• 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.

But she speaks with a voice that is much closer to the method or manner in which my mother has chosen to approach her life. Therefore, I honor my mother by subordinating my own voice to that of my sister.

Be advised, this is clearly a refinement to the art of advocacy. It is NOT a requirement. It is a refinement with seven years behind me coupled with lots of love and self-examination. While I have no doubt that I was a very effective advocate on behalf of my husband, I have to question whether or not I would be as effective on behalf of my mother without this knowledge and self-awareness. I think not. Were I the only one who could speak on her behalf, would this stop me? Not for a second! However, given a choice,

• 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.

For, after all, the greatest gift we can give another is the purity of our intention and my intent is to honor, respect, and love the woman who brought me "into the world with 'my voice fully engaged.'" And, for my mother, "screaming at the top of my lungs" is not the way to do it!