A Promise of Angels

I became the legal guardian of my older sister Colleen in the mid-1990s. Though I was living in New York City at the time, the Missouri county judge made an exception in granting me sole guardianship after I’d shown my participation with Colleen’s care in the years following my mother’s death in 1994.

Colleen lived in care facility for the disabled for about forty years. She’d been the victim of lead paint poisoning when she was three years old. She was the seventh child and less than two years after she was born, my brother George was born prematurely. Our mother’s focus was on the fragile premie and until her dying day she carried heavy guilt and deep remorse for not catching on to Colleen’s penchant for paint until it was too late. In fact, the medical establishment bears some responsibility. Colleen had been taken to the emergency room once prior with a fever that wouldn’t break. The doctor said she had a virus, and sent my parents and Colleen home without performing a urine analysis. My mother continued to try a futile and devastating fight to combat the rising fever, holding Colleen’s ailing body in ice baths until she couldn’t feel her own hands. Nothing helped. Then Colleen slipped into a coma.

By this time, of course, the brain damage was done.

She awoke from the coma one month later a different child– paralyzed on her right side, blind, with severe epileptic seizures, and what would be a lifetime of compounding physical, intellectual, and developmental disabilities and ever-changing cocktails of pharmaceuticals to address them.

Yet, Colleen’s life was a testament to the body’s innate movement toward healing. The little one first scooted around on her butt, and eventually was able to walk — after a donated surgery by the Shriner’s hospital in St. Louis to lengthen her atrophied right leg — feeling in front of her with her left hand, and dragging her right leg behind her. She attended the Missouri School for the Blind up to the fifth grade, where she pretty much reached her brain’s developmental level.

But it was Colleen’s spirit that carried her through her life. She was a serious chatty Kathy and wanted to meet, talk up, and touch the hand of anyone within earshot. She adored food — grilled cheese, french fries (NO KETCHUP!) and vanilla milkshakes were at the top of the list. She loved to sing (and dance!) to the pop and early rock-and-roll of the 1950s — especially up-beat sock-hop hits like Dion and The Belmont’s A Teenager In Love, all the hits by the Platters, the Everly Brothers, the Coasters. She also loved songs with stories of teen longing and heartbreak, like Dickie Lee’s Patches and Shelly Fabares’ Johnny Angel.

She was also fiercely curious. She loved to listen and point toward the sounds of planes overhead or trains passing by — wondering aloud where they were headed, who the people were that were traveling, and what adventures might await them. She wanted to know the origin of certain noises, and who might be in need of emergency care when she heard sirens. She wanted to know how things came to be, and how they worked. She loved to giggle, adored attention and presents and holidays, and lived her life fully — so often rejoicing in the mystery, often shaking her head and marveling at the way things fit together — laughing and saying “So strange, isn’t it?”

A few years back, Colleen started falling. This Delaware Public Health FAQ explains how “most lead settles in the bone, interfering with the production of red blood cells (leading to anemia). It also interferes with the absorption of calcium, which is required for strong bones, muscles, healthy muscle contraction, and blood vessel function.” Colleen’s posture began to suffer, and her center of gravity changed, which caused a loss of proprioception – the sense of her body in space. She’d always been prone to falls when she’d have seizures, she otherwise had found her way around pretty doggone well. But as her posture began to fail, her center of gravity, and the falls became more frequent and more dangerous. She knocked out teeth, suffered head wounds, broke bones. She had to start wearing a helmet.

For a while, she had a physical therapist and staff assisted her in using a standing desk in an effort to keep her legs strong, but it wasn’t successful. Her body wasn’t building muscle. Colleen was relegated to a wheelchair, and suddenly lost her freedom to move about. It was a very difficult transition. Her mind was still very young and curious, but her body was failing her. The falls continued — she’d awake in the morning and automatically get up to head to the bathroom, and down she’d go. Safety bars went in around her bed. She was seat-belted into her wheelchair. It was frustrating and confusing for her. She wanted to touch and move about in the wondrous world around her, but it was no longer safe for her to do so.

Colleen and Marline at her standing desk.

The breakdown of her bones and musculature, and the confinement to the wheelchair only weakened Colleen’s body further. Her breathing mechanisms were compromised and she had several serious bouts with pneumonia over a period of six or seven years. One was so dire, she was in intensive care and had to go on dialysis as her kidneys began to fail. We gathered as a family to have ‘the talk’ about letting her go. We met with a funeral home to discuss next steps. But overnight she rallied, and with the new morning and new doctor, there was hope for a rebound. She snapped out of it almost as quickly as she had descended into it. That time. She received chewing and swallowing therapy to help keep her from aspirating food, and had to really work to keep from chatting at mealtimes.

Colleen always had a strong belief in the Divine. She regularly sang songs like “Yes, Jesus Loves Me,” and “Sunbeam.” She talked to the angels when she’d feel a ‘spell’ (seizure) coming on, asking them to protect and help her. Family members who’d died became part of the flock of angels she’d talk to and mention in her prayers. For a long, long time, she didn’t fear death. She knew she’d be with Jesus, and she’d be able see her loved ones and walk and run again. She liked the idea that she’d be able to eat everything she wanted in heaven — and not just the soft blended food that had become her diet to prevent her aspirating food.

At some point in her later years, and kind of suddenly, she started expressing to me that she was afraid of dying during our weekly calls. My hunch is that someone in the (non-denominational Christian) home in which she lived threatened her with going to hell if she wasn’t more well-behaved. Part of Colleen’s brain-damage diagnosis was Explosive Personality Disorder, and we had learned as a family that you most often couldn’t derail a Colleen temper tantrum —and especially not with threats. She’d end up on the floor and she’d spit and cry and you’d get a nasty pinch or a good wallop if you got too close. We knew to clear the area and let it run its course, because when it got to this point, she was no longer choosing her behavior.

I tried to ease her back into the wonder of death, but it did no good. She was particularly hung up on the idea that when your body gets buried underground, it was down close to the devil. Partly because of her blindness, and partly due to her developmental level (that of a ten or eleven year-old), she couldn’t fathom the separation of spirit from body, or that the physical had nothing to do with where she’d go after death. It really broke my heart, because her faith before that was so pure, and I so wanted her to have a gentle transition when it was time for her to go.

In the summer of 2016, I was living in California. A solo performance piece of mine was chosen for a festival in New York City. My boyfriend Mitch jumped on the computer immediately to find flights for November when the festival was to take place. Out of the blue, he suggested that we take a week or so in New York, and then fly to St. Louis to see my family for Thanksgiving and stay a few days. I was a little surprised and pleased at the suggestion. Mitch wanted me to have some time with my sweet sister Colleen, and wanted to meet her himself. He also wanted to meet the rest of the (large) family, which would take some time. We set the plan: a few days in New York. I’d perform the night before we’d fly to St. Louis. We’d land two days before Thanksgiving, stay just over a week, and then fly home to California.

Two days before we were to fly to New York, I got a call from the Emmaus Home telling me Colleen was in intensive care with another case of pneumonia. I was fairly hopeful, since she’d bounced back in the past. But as we readied for our trip, she wasn’t getting better. She was getting worse. We flew to New York, still unsure. I did my best to meet up with all the friends we’d planned to, and was often met and with bewildered looks when I’d show up with mascara running and tear-stained cheeks. I spent hours on the phone with doctors, Medicare, family, and care providers, constantly worrying whether if I’d have to drop everything and go to St. Louis. I waffled agonizingly about dropping out of the solo performance festival. It was next to impossible to rehearse and practice lines, when Colleen’s life hung in the balance.

I was given many tremendous gifts during this time. The first was from from Peter, organizer of Solocom ’16. When I explained to him what I was managing, he very kindly said, “Jaene, if you need to cancel on the very day of your performance, up to the last minute, you can do that. No problem.” This took such a weight off my shoulders, as I didn’t have to worry about not showing up for the commitment I’d made to do the show. Mitch, also was such a loving support, held my hand as I sobbed my way all over the city — including in the copy place, waiting to fax consent forms to various parties awaiting them.

One morning, I called the ICU for a check-in with Colleen’s nurse. She said Colleen was no longer in the unit, and my heart dropped. She followed up quickly to let me know that Colleen had been moved to a ‘step-down’ unit. She forwarded my call to the nurse there. Within moments I was on the phone with a new doctor, who was distressed because, according to her, Colleen was non-communicative. I didn’t understand. She’d been intubated for more than a week. The doctor explained that the tube was out, but that Colleen was mumbling and didn’t seem to be saying words. But then I thought about our sweet Chatty Kathy. I told the doctor that when Colleen is excited, she talks really fast and you have to encourage her to slow down. I asked if I could talk to her. They put her on. I was so excited.

“Jaenie!” She was perfectly clear to me. I will never forget what she said next. “I went to HEAVEN!” I completely and utterly believed her. If anyone had a fast track to the angels, it was my sister Colleen.

“You did?!” I said.

“Yes,” she said. “Well, I didn’t go IN, but I went by there.”

I didn’t mince words. “Sis, I know your body is tired. Are you ready to go?”

“YEP,” she said.

I asked her if she was afraid anymore.

“NOPE,” she said.

“Okay,” I said. “I’ll talk to the doctor.

I got back on the phone with the doctor and told her Colleen had told me she was ready to go and that I wanted to authorize whatever would facilitate that. She put in the order for Hospice Care, and said Colleen would be able to go home and eat whatever she wanted. I talked to Coll once more to tell her what would happen and that, though I originally meant it to be a surprise, I thought she should know that I’d be there in a couple days to see her.

Within hours, it was all set up and Colleen was released back to Emmaus Home late the next day. I hung up the phone in New York and fell to my knees, so grateful that her faith in the beauty that awaited her had been restored. I wept tears of joy. I couldn’t believe how incredibly held she was — and we all are. The gift she received was also a gift for me, and for everyone who ever loved her and were concerned for her welfare.

Meanwhile, in New York, Mitch and I were gifted tickets to Saturday Night Live by my friend Tara. Kristin Wiig, a favorite of mine, happened to be the host. I was still unsure if I would perform the following evening, until the high I had after we saw the fantastic show, which is, at its heart, theatre. I thought if they can do ninety minutes in front of millions of people, surely I could do twenty in a little blackbox in Chelsea.

The next day, Mitch went solo on an all-day walkabout in the boroughs, while I stayed at my friend Celia’s East Village apartment, running and running and running my piece. (Celia was out of town visiting family, and we had exchanged a place to stay for caring for her two kitties.)

I performed that night and was pretty pleased with how it went. It was a little rough — definitely not as good as it would have been if I’d had all those hours originally built in to rehearse — but not terrible by any stretch. Mitch and I boarded the plane the next morning as snow flurries began to fall in Manhattan.

The next morning, my sisters Sharon and Jean, my niece Kelly, Mitch and I all went to see Colleen. We sat around her bed and chatted, and then Jean and Sharon, the eldest sisters, starting singing some sweet old songs. This is the part of the story where people always ask what else Colleen had to say about her Near Death Experience. Here’s the thing: by the time we got there, Colleen was non-verbal, so I couldn’t ask for more details about her Near Death Experience. The attendants at Emmaus sat her up in her chair for a bit, and she did tap her foot to the singing. We all got a kick out of that. She wasn’t completely out of it, but they were giving her morphine by this point.

As they were getting ready to put her back to bed, I decided to ask a yes or no question.

“Colleen, when you went to heaven, did you get to meet all the angels?”

Colleen shook her head no.

“Did you get to meet some of the angels?”

Colleen shook her head yes. We all saw it. We all were so thrilled.

The next day, Mitch and I were exhausted. We didn’t take the hour-long drive to see Col, but I asked the attendant at her home to let her know that we’d be there to see her the next day, on Thanksgiving. In the morning, Mitch, Sharon, my brother Jim and I went. By this time, Colleen was in bed and wasn’t responding to us much. I brought her a soft, fuzzy bear, put it in bed with her, and put her hand on it so she knew it was there. She loved soft, fuzzy things. The Hospice nurse came and let us know that it wouldn’t be long now. We visited awhile and Sharon was ready to get back and to prepare for Thanksgiving dinner.

I chose to stay with Colleen, and my brother Guy said he’d come pick me up later, after dinner at Sharon’s. The workers at Emmaus had made a pretty good turkey dinner, and I ate in deep gratitude, telling Colleen about everything on my plate. I took a walk around the snowy grounds of the Emmaus Home in Marthasville, Missouri. The campus was massive — 670 acres, an old German seminary that had become the “Asylum for Epileptics and Feeble-Minded” in 1893. Beautiful old place. I’d never explored the whole thing —it’s home to many people — but we used to gather there as a family every year for their fall bazaar. It had been a number of years since we’d been to the bazaar —I’d been out of Missouri for twenty years, and Emmaus had changed the date to spring. Some family members would still go, but it just wasn’t the same.

It had recently been decided that Emmaus would close and sell this property and bring residents into smaller homes. Colleen had been excited about a new place, but I was a little worried about her moving so late in life, getting used to a new place, new routines, people, smells, sounds… As I walked, snow was beginning to fall around me and I cried and cried as I hiked as far up the hill as I could until the weeds were almost as tall as I was. I was trying, as much as I could, to be present with this monumental transition for my dear sister. I wasn’t scared for her, but I was so sad for myself. She’d taught me so much about love and joy and laughter, and I knew it’d be hard to be without her. But I also knew, when it was my time, she’d be waiting for me with her angel friends. And I was so filled with gratitude.

I got back to Colleen’s room, took off my coat and boots, and lay with her in the bed. I brushed back her hair and kissed her face. I whispered to her that I would miss her, but that everyone would be waiting for her, and that we’d see each other again. She moved a little, letting me know I was laying on her arm. I got up and sat in a chair, and held her hand until my brother Guy came. We stayed a little longer so that he could tell her goodbye. I put the soft, fuzzy bear in the crook of her arm and kissed her once more. We left the Emmaus around 5:30, and got to Sharon’s about an hour later. A short time later, my cellphone rang and Marline’s name showed up on this display. Marline was an aide at Emmaus, and one of Colleen’s longest-running and best advocates. I picked up and she told me Colleen had passed just before eight PM. She said she was still holding the soft, fuzzy bear.

Side note: My mother had two birthdays. One she celebrated all her life, November 26, and one that she refused to celebrate, but was on her birth certificate, which she had to get when my father died in 1980: November 23. I once asked her in a dream which one it was and she was firmly in the November 26 camp. Still, we all considered both birthdays to be hers. It wasn’t lost on me that Colleen died on November 24th, embraced between the two. It also is never lost on any of us that knew Colleen that she died on Thanksgiving. Something happens to your heart when you have a loved one with special needs. It becomes a sacred storehouse of gratitude for the gifts given you by someone so special.

You probably can guess that I believe in a lot of things. One thing I’ve felt with Colleen since she passed —more than anyone else who’s gone on — is that she is close, always, and very accessible. When I feel her near, she is so free and expanded. She is ebullient with joy and love. She seems to be always giddy and excited.

In fact, while I was typing this, and adding the links above for the Colleen’s favorite songs, one of my browser windows was open to YouTube and had just played Patches. Another song began to play, (as YouTube will do when it is on autoplay). But, curiously — or not, because it’s Colleen I’m writing about — a song from the 70s (!) started up. This song was not bookmarked. I hadn’t given it a thumbs-up, but it’s most definitely one of her absolute favorites, Maggie May by Rod Stewart. She clearly didn’t want me to leave that one out! I wept with joy. Miss you, sweet girl. Love you so so much.