Chapter 14
A FAMILY AFFAIR
Jim was torn. He knew that the kids needed him at home more than ever. He knew that I needed him at the hospital. Until this point he had not yet mastered the art of bilocation, something that being a mother of five had forced me to learn long ago. But somehow Jim figured out how to navigate this difficult path. He would come in and sit next to me on a chair and tell me everything was under control. I couldn’t do much else besides nod weakly. Jim would describe the plans for the week and who was doing what. He never expressed any frustration to me; he only gave me reports on the action being taken to cover all the bases. If he was feeling overwhelmed, he hid it because I was in such a fragile state.
Occasionally he would ask me if I approved of a decision because that’s the way we always figured things out, but during this time I would just indicate my deferral to him. It was not the time for me to micromanage, though it was once one of my favorite pastimes. This was the first time in my life I’d had to let go, and Jim was a champion. He rallied the entire family, my parents and eight siblings, into action. If they were out of town, he flew them in. It was all hands on deck. Jim created a schedule so that somebody was always at the hospital advocating for me and just being there, and there was constantly a family member in my home so my children could hopefully avoid a future spent in therapy, bitching about their abandonment issues. I missed them terribly, but there was nothing I could do. I couldn’t go home and they couldn’t come to me. Jim’s idea was the perfect solution to make sure the kids were all right.
I saw my husband in a totally different light as he took over my job as commanding general of the Gaffigan family. I imagined him as Winston Churchill in the war room, masterminding complex strategies to cover all territories. And he was winning the war. Every time I woke up (which was several times a day since sleep was still an elusive concept), there would be a familiar face. I was also comforted by the thought that the atmosphere in our apartment had transformed into a holiday-like haven, with Grandma and aunts and uncles sleeping on couches and making pancakes in the morning—only this time, unbeknownst to them, the holiday-like atmosphere was to compensate for Mom being near death in the hospital. Just a spoonful of syrup helps the missing mommy go down. And there were other helpers at home. A lot of helpers. To cover the many hats I wear in the Gaffigan household, it became necessary to hire a team of people just to keep everything going. Along with my family staying there, there were three housekeepers, five babysitters, two assistants, and a partridge in a pear tree. It was like Downton Abbey, without the fancy clothes and English accents. Anyone who does not appreciate their mom should take down her job description and count the people it takes to fill it.
Jim would painstakingly compile everyone’s availability to go up to Mount Sinai and assign times for each sibling to be at the hospital. He referred to this schedule as their “shifts.” I was not a big fan of this terminology. Below is an actual example of “The Shift Schedule”:
Jeannie Advocate at Mt. Sinai—April 23–28
(O.N. = overnight shift)
MONDAY
Jim did Sun O.N.
7–Noon: Paul
12–5: Pat
5–10:30: Jim
10:30–7am: Liz
TUESDAY
Liz did Mon O.N.
7–Noon: Vin
12–5: Jim
5–10:30: Paul
10:30–7am: Pat
WEDNESDAY
Pat did Tues O.N.
7–Noon: Liz
12–5: Jim
5–10:30: Paul
10:30–7am: Vin
THURSDAY
Vin did Wed O.N.
7–Noon: Liz
12–5: Pat
5–10:30: Paul
10:30–7am: Jim
FRIDAY
Jim did Thu O.N.
7–Noon: Vin
12–5: Pat
5–10:30: Liz
10:30–7am: Paul
Jim took great care to plan ahead, making sure that the overnight shifts were balanced, noting who had “done” the last “O.N.” so no one had to spend two consecutive nights in the ICU, which was really smart, because—trust me—it sucked. I had the overnight shift every night.
My parents and my siblings all flocked to my side. They left their jobs, their own families, their own illnesses, just to come and take care of me. I initially felt guilty and embarrassed about this but they empathetically assured me that everything on their end could wait. All bad feelings about disrupting their lives diminished when Jim would report to me how happy the kids were. They made a huge sacrifice. I remember hearing that one night when Jim was on the overnight “shift” with me, my brother and sister-in-law were sleeping over, in our bed. One of the kids came in in the middle of the night and threw up on them. When I heard about this I felt horrible, but I also laughed. At least there was someone there to throw up on. I also secretly worried about how they cleaned it up because, and I don’t mean to brag, I am an expert. I can’t believe I was longing to clean up vomit in the wee hours of the night.
The heroism of my family amazed me. Immediately after I landed in the ICU my mother, who is terrified of flying on planes, went straight to the airport and essentially moved in with her grandchildren to be the next best thing to, and probably even better than, their mother. My brother Vincent, who runs a food community center that helps thousands of people get back on their feet, put the reins in the hands of his interns and came straight to New York. My sister Felicia, who works full-time and has two school-age kids, came to the hospital to be with me even though she was sick herself (not contagious). My sister Michelle, who is the director of a child care advocacy organization in Washington, DC, left her own two kids in child care and drove for hours to New York for “weekends with Shelly,” where she would visit me in the hospital and sleep at my apartment. The first time Michelle came into my hospital room, I was so happy to see her and I attempted a smile. I must have looked pretty hideous because she burst into tears at the sight of me. She then presented me with a “gift,” a huge bag of adult diapers. I mean it was Costco size. The whole scene was hilarious and heartbreaking at the same time. I didn’t use the diapers, but it was probably the best gift I’d received in my entire life. What an amazing gesture of sisterly love. Michelle was born when I was in middle school, so when she was a baby, I probably had actually changed her diapers. Circle of diapers.
While I was a teenager living in the house with all my brothers and sisters, I took my role as the eldest very seriously. The only way I knew how to express love to them was by being overbearing. I dressed them up, put on shows with them, and told them what to do every chance I had. I’m sure they all resented it, especially since my mother had a very laid-back style of parenting, and I was like Joan Crawford in Mommie Dearest but with the maturity of a thirteen-year-old. Much like the sudden role reversal that was occurring in my relationship with Jim, my younger siblings, who probably each had a memory of me cutting their hair, taking them for ice cream, or bossing them around (maybe all at the same time), were now at my side as my advocates and caretakers. Being incapacitated, I could observe them in a way I never had before and see what truly amazing people they’d all become. I mean, I knew they were amazing, but I saw qualities in them that were new to me, though I’d known them their entire lives. I also discovered that I’d been a closet “mom-ist.” Let me explain.
Mom-ist: (n) A person who believes that their identity as a parent makes them a superior person to a nonparent.
In ordinary times, the sisters I had the closest bond with were, frankly, the ones who also had kids. In my exclusive mom-bubble, I’d decided there was a secret understanding between mothers that excluded those who weren’t. I had many an exasperated phone conversation with my sisters who are moms, baffled by the antics of our non-kid-having siblings. I naively assumed that the experience of having a baby and being a primary caregiver would be a necessary requirement for someone taking care of a sick person in the hospital. Was I wrong. Here is just a sampling of what four of my non-kid-having siblings did for me in the hospital that changed my heart and mind, and enlightened me to shed my backward, mom-ist’s ideology.
A Case Study in Anti-Mom-ism: Jeannie’s Siblings with No Kids
Patrick is my youngest brother. I remember reading to him when he was a baby and forcing him to be in my plays when he was a cranky preteen. I took care of him the only way a smothering eldest sister can. He recently married an astonishingly beautiful woman who looks like if the sun rose over a perfect Iowa cornfield and became a human, and she has an enormous heart to match. Emilea is smart, funny, and a natural-born caregiver. Patrick definitely must have been looking for a wife with similar qualities to his sisters’, particularly the eldest. She takes great care of him and I imagine he is great at, well, letting her. Out of my three brothers, I always saw him as the “tough guy” and never thought he had a nurturing side. That isn’t to say he’s not sweet and warm and wonderful when he wants to be, but let’s just say he once babysat my pet turtle, and the turtle died. Patrick does his own thing and is the type who comes to family events when he wants to, but he isn’t governed by any sense of obligation. So when he was there in the hospital, I knew he wanted to be. And he took care of me. Really good care. He wasn’t standing around awkwardly asking if anyone wanted a cup of coffee from downstairs. He was like an angel of mercy. I would wake up to find Patrick at the end of my bed, massaging my dry feet with lavender-scented lotion. Yes, my feet. Was this the Holy Thursday callback I’d been waiting for? On his phone, he would play a recording of an Irish priest reciting the Rosary intercut with a beautiful voice singing about peace and love. He was patient with my complaints and took active measures to comfort me. During these times with Patrick, I was transported. Patrick was my shaman of the ICU and he had the peyote. Under Patrick’s surly exterior existed a selfless, gentle saint with extraordinary soothing skills—a talent I could learn a lot from as a mother. My illness showed me the gift he has in a way nothing else could have.
Paul is my oldest brother. I have always thought of him as self-sufficient, not necessarily a nurturer, although I don’t think his dog has any complaints. From childhood, Paul was always deeply immersed in a book, painstakingly drawing wildly imaginative pictures or writing pages and pages of fantastical stories. As an adult, he blossomed in his career by channeling his talent into writing graphic novels and found an outlet for his quiet, biting wit as a cartoonist for the New Yorker magazine. I’ve always admired him, loved him, and been entertained by him, but prior to my sentence of being trapped in my body, I never realized how much I needed Paul. I obviously knew he was an intellectual, but when he came to visit me I saw into the soul of his intellect. Sounds like an oxymoron, but stay with me here. In the hospital, Paul was the caregiver for my mind. He knew instinctively that though I couldn’t communicate, my thoughts were racing and needed some TLC. He always came in for his “shift” with the latest podcast to help me pass the excruciating time: the true crime mysteries that would draw us in deeper and deeper and then amount to no answers. The S-Town one that sucked me in and then got so incredibly depressing that I tried to smother his iPhone with a pillow. I loved the Missing Richard Simmons one so much. I listened to each episode expecting a dramatic explanation for what had happened to him and why he had disappeared, but in the end it turned out that he got tired of being everyone’s self-help guru and just wanted to be alone. Richard only desired some privacy, and here I was stalking him in his podcast. Sorry, Richard. But thanks for making my life in the hospital better. You helped me, and you didn’t even have to break a sweat to the oldies.
Paul read books and articles out loud to me as he sat in the room in business clothes before he would go to work. He sacrificed his time for me to keep my mind engaged. “Use it or lose it.” He was rubbing lotion on my dry brain. His intellectual generosity shone in a way that I’d never seen before. He knew that a mind is a terrible thing to waste away in the ICU.
My sister Maria is a licensed midwife, massage therapist, herbalist, and practitioner of acupuncture. It was her skills as a doula, however, that made her perfect for me in this situation. A doula is a woman trained to assist another woman during childbirth. Having birthed five kids, I could draw many parallels between what I was going through and a traumatic childbirth experience, but without the reward of a happy baby at the end. Maria is an incredible support person, but she also has been known to go rogue in her methodology. When I was nine months plus pregnant with Michael, I was told by my ob/gyn that if I went two weeks over the due date, I would have to go in for an induction. I was terrified of hospitals (ironic, I know) and beside myself, having tried all the natural ways rumored to bring on labor, so I called Maria and begged her to help. She told me to drink some castor oil. I was skeptical so I WebMD’ed it and basically what I read was, “Don’t ever drink castor oil!” But Maria told me to ignore the castor oil haters and just drink a little. It was agonizing, but it worked. The effect that horrible castor oil has as it rips through the body is like when you use jumper cables on a dead car battery. Michael shot out like a bullet. I wanted to thank her and kill her at the same time.
After my brain surgery, she was again at my side, but this time in a strict hospital setting with lots of rules against things like drinking castor oil. She had many critiques concerning the ways I was being cared for, such as the highly artificial ingredients in the formula used for my nasogastric feedings, but there was absolutely nothing she could do to change it. She’d stand when the nurses came in to pour a can of formula into my feeding machine.
“Hi, can my sister have a formula without whey by-products in it? I think it’s causing a lot of phlegm and exacerbating the pneumonia.” The nurse would look at her like she was crazy.
“You’d have to speak to her doctor about that.”
“Gladly. Is there maybe a nutritionist I could contact?”
“You’d have to speak to her doctor about that.”
As I lay there observing Maria, what I saw in her was smoldering anger at the many contradictions of Western medicine. She appreciated and recognized that special something that all the nurses or anyone who works in an ICU has, and she felt a connection and camaraderie with my hospital caregivers. It was the rules that she couldn’t stomach. I considered getting her a T-shirt that read “F the FDA.” I saw in her a tortured rebel who longed to throw regulation to the wind and stick needles into all the acupoints of the conventional medical system to purge the big pharma parasites. She was angry for me. I felt validated.
My youngest sister, Lizzy, is the nonconformist of the family. The Divergent. She is the type who would change her favorite color just to disagree with me. Being the youngest of nine children, Lizzy spent her life being parented and advised by all of us ad nauseam. As a result, you just can’t tell her what to do. But in the hospital, she turned out to be the most empathetic and understanding of what I was going through.
Whereas some visitors would sit at a seven-foot distance from my bed, Lizzy was never more than seven inches away from me at all times. When she was leaving, she would tell me when she was coming back and ask me if I had any special requests.
“Gin and tonics and chocolate ice cream?” I would whisper.
She’d laugh. “Besides that.” Though I couldn’t see myself, I was incredibly annoyed by the feeling of tiny prickly hairs between my eyebrows.
“Tweezers?” I acted out plucking.
“You got it!” she said. The next time she came, she brought tweezers and cleaned up my eyebrows, an incredible act of mercy. Think about it, ladies. You’re lying there in a bed without a mirror for weeks and you start to look like Eddie Munster. I was elated. Next to my bed, there was a digital meter that showed my oxygen levels. Most people walk around easily with levels of 98 or 99, but due to the pneumonia I was struggling in the 80s—this was a somewhat dangerous level. When Lizzy tweezed me, my oxygen levels would shoot up. Someone should do a study on that: “Pulmonology and the Art of Tweezing.”
Sometimes I would get frustrated with the nurses if they went to get something for me and never came back. When I whined, some of my visitors would (rightly) defend the nurses: “They are busy!” But Lizzy would have my back and go find them. If one of my other family members complained about a chair being uncomfortable while I was lying there gasping for breath with purple IV bruises all over my arms, I would shoot Lizzy a look and she would feel my pain. It became funny. If someone was helping me walk and they had their hand on my back in an attempt to steady me but were inadvertently pushing me along, Lizzy would gently intervene. She was the only one I could tell if someone came to visit and they smelled like coffee breath or unshowered, and she wouldn’t judge me as an ingrate. She was always holding my hand. I recall seeing her face close to mine when I woke up. Her eyes filled with compassion. “Sick of it,” she would say, speaking for me because I couldn’t.
Growing up, when my exhausted, overwhelmed mom would get really mad at us for running wild or being disobedient, she would yell, “That’s it! Go to your room!” Then, as she was walking away, she would mutter half under her breath, “Sick of it!” This became a catchphrase among us siblings. All we needed to do was say or text “Sick of it!” to each other, and no one asked any questions, we just understood. It was an inside joke. A way to process frustration and also have fun. It was a secret code language that only siblings can understand. With “Sick of it!” came volumes of history and memories. In those moments in the ICU, Lizzy looking at me with such compassion in her eyes and saying “Sick of it” was my morphine.
But it wasn’t always a lovefest in the room. Anyone who has been in a similar situation knows that family members who come to the hospital to help are unique in that they don’t have to pretend to act polite. Sure, the first time they see you they’re shocked and give you the same fifteen minutes of celebrity that they did on your wedding day or when your first child was born. After that, it doesn’t take long for familiar relational interactions to resume. You know how it is when you all reunite for a holiday and everything is great and then mid-meal you regress into seven-year-olds: “Mom, Felicia took the last Coke!” After a few days in the hospital with my siblings, we were back to the same old patterns: Me bossing everyone around, and them not taking it. Me getting irritated by little things, and them being oblivious. But they were there, so I really couldn’t criticize them without seeming like an ingrate. Except I could complain to Lizzy.
Even though I was usually acting like a cranky, entitled baby, Lizzy was my confidante and understood my reactions to some of the other family members. We laughed about it. I couldn’t actually make any noise, but I was laughing. It was therapeutic. Together we created a list of dos and don’ts specific to my family in the hospital. It helped me cope. She wrote it all down. I made her promise that in the event of my untimely demise, she would keep it classified. But I got out, so here it is:
Jeannie’s Rules for Jeannie’s Family Members Helping in the Hospital
DOs and DON’Ts List
• DON’T talk about delicious food if patient can’t eat.
• DO harass nurses when they are hiding.
• DO arrange room and organize personal property since the patient can’t move.
• DO declutter room PLEASE! Don’t leave your crap all over.
• DO bring lip balm, lotion, mouthwash, or moisturizer.
• DO read stories and play podcasts.
• DON’T say, “It’s not so bad.”
• DON’T defend the nurses or doctors if your loved one is suffering.
• DON’T call your visits “shifts.”
• DO bring a brush and tweezers. Tweezing makes oxygen levels go up.
• DON’T silently check your email for hours.
• DO give lots of touches and hugs.
• DON’T leave open snacks in room when patient can’t eat.
• DO brush your own teeth.
• Yes! DO smell good.
• DO bring meditation recordings.
• DO massage feet.
• DON’T massage site of wound.
• When the patient walks, DON’T push them.
• DON’T complain about the chair in the hospital being uncomfortable.
• DON’T complain about not getting enough sleep.
• DON’T complain about anything.
• DO express empathy.
• DO be patient with the patient (it’s not about your feelings).
• DO organize cards people have sent.
• DO read cards out loud.
• DO reach out to people who have sent cards on behalf of patient. Thank them. And tell them patient enjoyed hearing them.
• DON’T bring flowers into ICU; give them to the nurses’ station.
Jeannie’s Rules for Patients (Herself)
• DO love your big family and be kind to them when you are healthy. They will save you when you are sick.
• DON’T make a rules list about your family and publish it in a book.
• DON’T be a mom-ist. Get woke.