It Takes a Village: Remembering Jill

In the past few days, as I reflect on Jill’s life, I keep thinking of that phrase, “It takes a village to raise a child.” That is never more true than with a special needs child. Jill had many villages, many communities of support throughout her life. We of course had a large family. My mother, as you all know, was her steadfast supporter and caregiver. Jill had aunts and uncles and cousins that through the years brought her joy. Jill was famous for remembering everybody’s birthday. I mean, Everybody. Cousins got cards. Cousins’ children probably got cards. I joked the other day that Jill owned stock in Hallmark. And Jill took pictures, lots and lots of pictures. As we went through Jill’s boxes of photos on Tuesday, there were pictures of her with aunts, uncles, cousins, second cousins, friends, family. People gave her joy.

She loved working at APA, and that was one of her villages. The people who worked there looked out for her. They were her family, too. And after work, she loved going to ceramics with Aunty. For those of you who were with us yesterday, you saw some of her ceramic handiwork. There were statues of hers around the room. We all had large collections of ceramics from Jill.

We won’t talk about the times that Jill insisted on going to ceramics even when Aunty didn’t go, when Jill had no ride home. Yes, Jill was also famous for her willfulness.

Another of Jill’s villages was the neighborhood we all grew up in. The adults looked out for her as they looked out for all of us. And there were the girls on the block, Eileen, Rosa, Diane, and our cousin, Lori, who were her community of peers as little girls. Eileen still joined her for coffee occasionally. Jill would always call to tell Kathi and I when she saw Eileen.

Then there was Friendship House, her workshop. She was proud of her participation there. She worked in the kitchen. She relied on her counselors, Jean and Tina, to whom we are eternally grateful. They are our village as well. And from all the care that Jill received, she learned to give. Jill would buddy with a blind woman at Friendship House, being her eyes, taking her for walks.

And then, there is NIPD, her extraordinary community of peers and caregivers, her home over the past eight years. There is her Best Buddy, Susan, who she loved as a sister. There is her Tea Buddy, Jeanie, her Guy Buddy Gerard, and Kate, and Danny, and Joe—her friends and housemates. Then there was staff, her extraordinary staff: James, who made her laugh; Carole, who took her shopping, the Jens, Nikki, Nikia, Leticia who kept it all going, Ursula who helped her with the lovely scrapbook you all saw, Jill’s own memory book of her life. There was Ari, dear Ari, John, William, Andrew…and I know I am forgetting names. Forgive me. And Ralph who along with Carole, stood vigil with us at the Hospital on Monday.

It takes a village…

I can’t help but think of Jill as joyous right now, as free. She had limitations in her life, in her body, as we all do. But hers were more obvious. She has no limitations now. Jill lived in a compromised body. As a young person, that upset her. She knew she was different. When she was older, especially since she has lived in community at NIPD that no longer troubled her, because she found her place, her family, her home.

Yes, she lived in a compromised body, but through her gifts of tissue to the Sharing Network, recipients will live less compromised lives because of Jill. Two people will regain their sight from her corneas. She may help up to seventy people with other donations. It seems a fitting tribute that Jill will help other people live more freely.

In closing, I want to share an email I received yesterday from my dear friend Steve, who is quite emotionally astute. He writes:

Thanks for your email about your sister Jill. Though I had spent only a few moments with her, I found news of her passing very emotional. As I type, the feelings are just below the surface and easily touched. I’m thinking that Jill registered something in my heart that didn’t touch my mind or eye. The world that we live in is truly a strange one, full of mysteries, complexities, and things that will forever baffle us.
Lives such as Jill’s and the effect of her passing are obviously incomprehensible. I’m thinking that the day you were faced with decisions dealing with her and the heart attack also revealed to you more than what our rational mind can understand. Please share my thoughts with your family in their time of grieving.

He signed it:

“With incomprehensible love, Steve.”

With incomprehensible love… Perhaps that is what Jill can teach us still. Incomprehensible love. Because, while we can all see her handiwork of pictures and photo albums and ceramics, Jill’s real legacy is people. Kathi and I joked the other day, that in a family of introverts, Jill was the extrovert. She was always social. In the past few years, whenever anyone asked how Jill was, I would always say, “Great. She’s the happiest one of all of us.” And it was true.

—It takes a village. She was happy because of that village. You were her village; you are our village. Thank you for bringing joy to her life.

The Number of that Bus

Forgive me if this seems unseemly. I have grappled over this past week with what and how much to post about recent events. I am noticing a familiar pattern. I make moves to step out into the world in a bigger way… and some other huge event overshadows my step-by-step efforts and stops me in my tracks. So, this excursion into blogland is my attempt to fly in the face of another such event and say, “I’m going out, in spite of it all, and I’m going to do it in my own way.” I’m an introvert. I swim in the deep and profound.

As I’ve been considering how to start this blog, someone asked, “What is it about?”

I didn’t have a ready answer. It’s about what it’s about as I begin to write it, I thought. But, at the same time, I knew that some of my subject matter was death and illness. I’ve been musing on the book I want to write about my experiences with illness and death, primarily over the past decade, but also informed by a sudden loss and the beginning of a search in my teens. I’ve been laying the groundwork recently: setting up a quiet area in which to do more introspective writing; deepening my meditation practice; quieting my mind to develop the concentration and focus I will need for the project.

I had planned to reach back into those months at New York Presbyterian in the summer and autumn of 2007 when my family and I began to inhabit the hallways of medical trauma alongside our mother. The story would focus itself there to begin with, because that was both the most compelling and concentrated experience, and it was also the experience that brought my own recent journey though illness and the companioning of a friend through lung cancer into focus as a clear pathway in my life. But, sitting on the edge of beginning to tell that story, I found myself once again with my family in the hallways of medical trauma.

On Monday, February 6, 2012, days after a having celebrated my birthday with eighteen friends and family and the morning after having watched the Super Bowl go down to the wire with my brother Michael, my sister Kathi, and my sister-in-law Nancy while rooting for the Giants here in Jersey and trash-texting my sister Laura in Massachusetts—

—my sister Jill stopped breathing. Because Jill was developmentally disabled, my sister Kathi and I were her guardians. We got the call that morning and rushed to the Emergency Room. When I arrived with Jill’s inch-thick medical file in hand, ready to reactivate my battle-honed medical advocacy skills, I found Jill unresponsive to my greeting. She was lying still on a gurney staring straight at the ceiling.

I’d seen my mother in deep sedation, for days after catastrophic surgical complications, with her eyes partly opened, so that was my first thought. Jill was intubated and would likely need to be sedated not to pull the tube out. But the thought was not that clearly defined. I just took in the scene, assessed based on past knowledge, and walked toward the desk where the physician’s assistant (PA) stood.

“Is she sedated?” I asked. The answer was No, and I began to discern the territory. Kathi, who had been in a family waiting area, joined me along with Carole, the staff person from Jill’s group home who had found her, and Ralph, the director of the group of homes. I handed over pertinent medical documents describing Jill’s conditions to Jocelyn, the PA, at some point, and Kathi, Carole, Ralph and I began our vigil.

Over the course of hours, we watched as Jill’s oxygen saturation levels (sats) hovered in the low eighties. Doctors arrived and consulted with nurses and respiratory therapists. We stood out of the way and watched, understanding, in part, that our presence there probably depended on our not interfering with care. If we showed ourselves to be a family that could remain calm, they would allow the four of us (there should be only two) to stay.

When Jill’s sats began to improve and stabilize, a doctor Lee came to explain what all had happened. Carole had already filled us in on Jill’s last few days, the previous night in which she had trouble sleeping, and the earlier morning. Jill had had a cough, so staff took her to her doctor on Friday. He prescribed antibiotics, which she began on Saturday. On Sunday night, she kept coughing herself awake, so Carole, who was the overnight staff that night, made her tea and toast and watched some TV with her. When Jill was still not feeling well in the morning after breakfast, Carole suggested she go lie down. There was some thought of taking her back to the doctor. Ten minutes later, Carole went to check on her and found her not breathing. She called James. They got her on the floor. He began compressions. Carole called 911. James continued CPR until EMTs got there. They eventually got her heart restarted, but what we came to know at the ER was that she had been down for 20–30 minutes when they got her back. That is, 20–30 minutes without oxygen to her brain. Hypoxia. (Vocabulary Word: One.)

What Dr. Lee explained was that after Jill’s heart had stopped, her lungs began to fill with fluid. They were diuresing her to remove the fluid by increasing urine output. I recognized this therapy from the days with my mother in the hospitals when she suffered congestive heart failure. As the container at the foot of Jill’s bed filled with urine, her sats rose. But, Jill’s condition was becoming clear. This was not good. However, they were preparing to move her to the ICU. But before they could do that, she coded again. We did not know this till later, but I believe that was when the neurologist, who we were waiting to speak to, pulled the curtain closed. When she came back out, she directed us to a private family waiting area and gave us her assessment.

Jill was having what appeared to be repeated seizures. She explained that this was not, in fact, seizure activity but myoclonus, (Vocabulary Word: Two.), spasms resulting from the return of oxygen to the brain. She explained very carefully that they would not be able to tell us with any certainty the condition of her brain for 72 hours. Legally, they could not make that call for 72 hours.

There is more to tell… Some of you know how this ended. Others have begun to suspect. They moved Jill to ICU. We, as a family, were once again standing outside the double doors of an ICU ward. I wondered aloud if other families become as familiar with such corridors as we have. Many don’t. Some do. Some still will. I am beginning to tell these stories for the latter two. There is a path, and there is company on that path. If you find yourself alone in those corridors, know that others have stood there, too.

I have stories of the waiting room at NYP, of ICUs I have known. There have been a few. My friend, Maria, who was familiar with such hallways, who hovered in them with me and became my one-person support group, had recently led her family back into them herself. A bit of her story is below. But back to Monday…

As the day progressed, Michael and Nancy arrived. I got Laura on the phone, and she headed down from Massachusetts. Once we learned that Jill had coded a second time, we made her a DNR (Do Not Resuscitate). We were beginning to understand she would not come back. A cardiologist made it clear to us that while the doctors, legally, had to wait for 72 hours, we, as a family, could make a decision at any time. This was an important piece of information. I did not like him at that moment, however, each piece added clarity to the puzzle and the path. Kathi and I consulted with Laura as she drove. We told her we’d made Jill a DNR. She concurred. We told her we might remove her from life support. She said not to wait for her if it seemed clear.

At around 5:00 p.m., Jill’s pressure dropped steadily to a low of 41/18. She was on high-dose pressor medications, which was the only thing that kept her pressure up at all. She spiked a brain fever of 108°. As we watched her and told her to go to Mom, Kathi, insightfully asked: “We are telling her to go, but are we keeping her?” After what we had seen with my mother, we knew that we never wanted to see Jill like this, never wanted to put her through this. The one blessing was that, as had become clear over the hours, she had no idea what was going on, at least, not as a consciousness in a body. I do believe her soul was aware, but she was not suffering.

At around 6:00 p.m., we made the call to remove her from life support. After an odd and confusing spike in her oxygen sats as soon as she was extubated, she died within minutes. Kathi and I held her hands as she passed.

There are more stories and details of that day to tell. But for now, I will leave it there. This is and will continue to be my subject matter. This is what, at least for now, the blog is about. But the blog will also be about not just the dire circumstances of illness and death, but the angels along the way… The extraordinary moments that arise out of these events, the connections that happen. I seem to have to tell the story of what happened, the facts, before I can tell the stories of the extraordinary moments, the meetings along the way, the Mystery unfolding.

We do not walk these paths alone. For those of you who don’t know, angels don a human form. And at such moments, they abound, if we have eyes to see, if our hearts allow their presence.

Please bear with my through the hard details as my written journey unfolds…

Below read a remembrance of my friend Maria who died a bare month ago in a similar way as Jill. And read my eulogy for Jill, which is a celebration of her life.

Thank you for walking with me…
Cynthia Imperatore
2.16.12