Tuesday, October 5, 2010

Enough

Last week, I went to a memorial service. Filled with memories, music, and love. It was beautifully planned. And there was meaning in what family and friends had to say. Portraits finely drawn -- everyone touching a different piece of this man's life, of his legacy. This was the memorial service of a great man -- a much beloved icon who was the change he wanted to see. The death was unexpected and quick -- a vibrant soul in his 80s with a lot of life left to live. He died as he wanted -- with his boots on. The house was packed with those who had come to pay their respects -- a veritable who's who of the world he inhabited.

It reminded me of a memorial service for one of the dearest friends I will ever have. Passionate about what she did -- a natural advocate for her patients, her family, her friends. She grew up with parents who were marching on Washington and advocating on behalf of migrant farm workers. She had a childhood that I, from my safe middle-class upbringing, could only imagine. She could hold me spell bound with her stories. And she would leap into the fray to fight for what she thought was right.

A story within a story.

I well remember those last days of my aunt's life. Her court appointed guardian, armed with all the health care proxies and orders that I needed, it was still a struggle to let her go. Sheila wasn't going out with her boots on -- no sirree, she was in the last throes of a full-blown dementia that had started out with self-reports of little people living in her ceiling. A warrier woman in a man's world -- her life is a story for another day.

When I tell about how she died, I will often say that I fought on multiple fronts so that we could let her go. It was the ending battle of a war that began when I first started to pay her bills. Sitting in her apartment, sorting paper, and gamely trying to carry on a normal conversation about those little people living in the ceiling.

It was Lisa though who made the last argument that freed her -- who took up my fight, my burden, and bore it for me on those last few steps. I had arrived on her doorstep -- armed with all our favorite goodies and a story to tell. A story of a visit to a nursing home, an IV fluid being started by the doctor on call, and a nurse that was crying about her baby. Her baby -- my aunt -- a woman who would have likely chosen to die much earlier in this journey if it had been left to her. The crying nurse who only meant the best. Who had called the doctor on call to ask that IV hydration be ordered. Made the call despite a clear notation on the chart -- no artifical nutrition or hydration. None. Nothing. Nada.

Yet, there was that IV, there was that crying nurse, and there was I -- unable to cause pain to someone in so much distress, with no strength to pull the plug -- for what seemed like the umpteenth time in a battle that had gone on far too long. Drained and spent by the last few weeks -- weeks of parsing out a palliative surgery rather than a restorative surgery with a doctor who wanted to restore. Weeks that included learning that the nursing home DNR would not carry in the ambulance or the hospital -- one needed one executed for each setting of care. That's three doctor's signatures, three times of saying, these are her wishes, she would want to die. Weeks that included a family meeting around the meaning of artificial nutrition -- how would my Aunt define it and what would she want. A family meeting where for the first time ever in all the years that my aunt resided there -- they brought her to attend it. To preside in her diminished state over my decision on her behalf. A silent witness to my voicing that enough was enough.

"I just couldn't," I said that night after I told my sad tale of woe about the feelings of a Catholic nurse as they intersected with what I knew to be right. Feelings that so overpowered me with the rawness of the emotion that I couldn't pull that plug yet again. Looking back, I am in awe at the love that nurse had for her baby, my aunt. At the time, I dismissed it but it was true -- that was her baby and I was taking her away. Forever.

"You have to," Lisa said -- "if that IV runs all night, Sheila could live another week." How stark, how cold those words must sound but they brought me comfort because I knew that -- even without the favorite foods from Citarella -- the next words out of her mouth would be: "I will call and take care of this." And, she did.


She called, she got the doctor on call and the IV was removed. Just like that. And, a couple of days later, my aunt exited this world. It was fitting that she would exit on a Shrove Tuesday -- this gregarious woman who built a share house on Fire Island and filled it with laughter and good times. As I remarked to my Mom -- she left at the height of the party before the penance of lent and that is how she would have wanted it.

I am indebted to Lisa for carrying me those final steps. Just as she was indebted to me for all the ways in which I had taken care of her. Small things though -- those were my specialty. Helping with the laundry, the cleaning, the grocery shopping. Fronting the rent if money was short. Many a dinner delayed or interrupted by a patient. Visits to the hospital and coping with the wide emotional swings of steroids as she coped with a progressively debilitating disease. Fitting seeing Africa around her love affairs with not one but two men in Malawi. Living through the terror of unreturned calls until I and others said -- "if you don't answer, we are not going to panic. We am not going to worry. We will be here if you need us."

At times, it was a friendship that could be consuming of me, of my aspirations. Because of her illness, her needs were greater and who she wanted to be was so much larger than who I wanted to be. She had been the change she wanted to see almost since childhood whereas I had been the caregiver, the nurturer, the friend. It's not so much that I was someone different than the woman I am today -- it was more that I was growing up and finding myself. That last year of her life was the year I started to be the change I wanted to see. That was hard on our friendship but I supose inevitable.

At her memorial service, one of her friends said in that serious way he had, we all knew that we would be here together for this purpose some day. Just not this day. Not this soon. In a gathering that included her patients as well as her friends and family, we did not speak of that decision she had made but only of the person that she had been. In the midst of the impassioned eulogies about her great promise, her great commitment to her work, her great achievements -- I spoke of her love of strawberries and other small things. I think I wanted people to know that that change agent was also a woman with an obsession for jewelry, a love of odd little movies, and a laugh that I can still hear in my dreams.

Looking back, I don't think she just woke up one day and said enough but rather she approached this final decision in the same way she approached most things. Organized. Efficient. Final.

She left no note but I think it all boils down to " enough." Enough of the struggle of living with a rapidly progressing, debilitating disease and knowing where it will lead. Enough of retooling my vision of who I am and what I can be to fit my more diminished outlook. Enough of working so hard to try and make it all work. She had envisioned a life as a change agent and through a sad twist of fate, she'd been handed a disease (or maybe even two) that had put her on a long, slow, painful path to death. She knew that the path she was on would not be easy. Just days prior to her death, a new red scooter had arrived and she had taken it for its first spin. It was cherry red and really quite cute. It was the first -- and last -- acknowledgement that her future held a wheel chair. Because, quite simply, she changed her future.

A warrier to the end, she chose to go out with her boots on. When her mother called me that morning as I got off the plane in Boston, I knew that this was it. The call that I had known would come some day, the call to say that Lisa is gone. The memorial was like the one I attended last week - big, filled with love and remembering. Yet, the sorrow was different -- it was the sorrow of knowing that someone had died before fulfilling her promise.

I remember a conversation with a friend following her death about the nature of courage. Is it more courageous to fight the battle until the end or to know when to surrender? We agreed that what Lisa did took a great deal of courage. Now a little bit older and a little bit wiser, I think that that question -- to be or not to be -- requires courage no matter the answer in the face of debilitating disease. Lisa knew the battle she would face and once that cherry red scooter appeared in her apartment, it was inevitable that she was going to have none of the future that scooter represented. She was not going to live a life that was any less of a life than the one that she had envisioned for herself. That takes courage.

Choosing to embark on the journey with the cherry red scooter takes courage as well. You know that you are embarking on a journey that will be difficult and long and, at least in Lisa's case, filled with pain. I do not know which choice I would make -- I can only hope that I will have the courage to make it.

A decade later, this is the eulogy that I wish I had given for my warrier friend. A proper send off for a life well-lived and a woman well-loved. A eulogy that reminds people that the taste of fresh-picked strawberries on a warm summer day is just as much a part of a person as being the change that you want to see. A eulogy about how friendships have their ups and downs but that the good ones survive and flourish. A eulogy about supporting each other as best we can. A eulogy that spoke about the choice that she made and the courage that that took.

Lisa, this one's for you.







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