Some are born with good luck, but I was 30 years old before Lady Luck smiled on me with full radiance. She arrived in the form of a petite bundle of feistiness, inherent smarts, political savviness, personal warmth, playfulness and beauty both inside and out, named Susan DeMarco.
I apologize for turning inward for a personal commentary today, but DeMarco (as she’s called by all who have known her) is an admirable example of the virtue of citizen activism. She didn’t dwell in the media limelight, yet she’s one of our country’s everyday people who consistently works to make a positive difference in all they do, accomplishing so much more good than the bulk of politicos and other sparklies who are perpetually in the public eye. She’s been a teacher, a leader of public interest groups, an investigative journalist, the author of three books, a government official, a public policy innovator and a mentor, as well as a lifelong champion of economic fairness, social justice and equal opportunity for all. In other words, as one activist put it, “she’s a firecracker.” For some 45 years, it’s been my good fortune to team up with this woman in assorted progressive populist battles against the big shots trying to run roughshod over the democratic values of workaday people.
Alas, on the first of April, DeMarco slipped away from me and all who loved her. I was alone with her when she drew her last breath, 18 hours after I asked the hospital to honor her previously written directive that all life-support tubes be removed from her body. Crushingly sad, of course, yet deeply rewarding, for she not only conquered the blood clot that had slammed into her brain, but also our society’s high-tech medical imperative that she be held captive in her own damaged body.
And how very DeMarco that she managed to fly away on both Easter Sunday and April Fools’ Day!
Tributes and heartfelt reminiscences have poured in from all over. She would have been amazed by how many people appreciated her – her work, her assistance and her example. One longtime Texas friend summed up the New Jersey native with the highest of Texan accolades: “She was mighty fine.”
No need, however, to send flowers or make donations in her name. Rather, she would hope that the comfort of her pain-free passing in an Austin hospital might alert others to consider the possibility of controlling their own end times. The last message of love that DeMarco sent to all of us was this: Plan ahead. Life comes at us fast, and this often includes its abrupt end. She was able to die on her own terms only because she had previously signed three essential legal documents stating her wishes and empowering a trusted loved one – me – to allow medical officials to switch from life sustaining to palliative care, letting her die naturally and without pain.
The documents are Durable Power of Attorney, Declaration of Guardian and Advanced Directive to Physicians. As legalistic as all of that sounds, it’s not complicated to get and fill out these standard forms. Indeed, most hospitals today have and will provide free copies of some of the forms to those who ask. In addition, a recent Medicare provision pays your own doctor to spend time during your physical exams to explain, discuss and assist you with Advance Care Planning.
One more thing I learned from this experience is that it’s not enough to have signed the end-of-life documents – you also need someone who knows where they are when the time comes. Hospital officials cannot take your word that the documents exist. As I frantically searched her “filing system” – i.e., unmarked piles of stuff around her bedroom – I could hear her saying, “Come on, Hightower, time to go!” Luckily, they were found, and so she was able to depart as she wished.
Above all, DeMarco was a free spirit – full of life, curiosity and imagination. She delighted in the diversity of birds that populated her big South Austin yard, from shy cardinal couples to raucous grackles, and she often had magical dreams of actually flying with them. She even imagined her final exit as a joyous, avian-like experience, as expressed in an old, uplifting gospel song she liked: “I’ll Fly Away.” And that’s just what she did.