Almost right after we bought the house in 2011, my husband was diagnosed with stomach cancer. We were at the doctor’s office, and he was totally stone-faced when he got the news. I was crying. I couldn’t understand the implications—my brain had trouble wrapping itself around the situation—and the word itself just seemed so harsh. Cancer. The disease was hard to endure—the concept of it, and the treatment.
These are the things that I’ll never forget: going to the hospital every day after work, being with him in the room, trying to protect the children from the worst of it. And we were alone—no close family to lean on. Marcus was graduating from high school, Chelsea from middle school. The kids still needed us so much, and my brain had to contend with—What if he dies? What will I do? What will the kids do? But my husband was very strong all through chemo and surgery. What happened, though, is that it took years to be in the clear, to beat it, and it took him over mentally. It was a Pyrrhic victory. Physically, he recovered. But mentally, he was never the same.
It must have been around 2014 when I started putting it together. I noticed little things, little lapses that were easy to justify at first. Maybe he doesn’t remember X because he’s just never paid attention to these things. But he also seemed a little dull, expressionless. And he was forgetting things—he wasn’t sharp anymore.
We were on vacation. We were taking this tunnel from Northern Italy to Austria. It was the most beautiful thing I’d ever seen—just breathtaking scenery all around. I was driving, and my husband was in the front seat with me. The kids were in the back, along with a cousin of my husband who worked with geriatric populations in Austria. She kept looking at him, watching him. And we both noticed that his affect, his eyes, were totally flat—like he wasn’t receiving any information. His cousin pulled me aside later and said, “I don’t like the way he looks.” She was the first one, as an outsider, to point out that something was happening.
My husband kept going to work, but it was obvious that whatever was happening to him, it was progressing quickly. I knew these types of degenerative neurological diseases just get worse with time, so I wasn’t optimistic. I was also in denial—part of me didn’t really want to know what was happening. They kept him at work out of loyalty. He had been there for fifteen years—an exemplary employee. With time, though, he was losing the ability to complete even the simplest tasks. He couldn’t fill in his time sheet or log in to his computer. He began getting lost on the train on the way to work and I would get panicked calls from him—I’m lost, I don’t know where I am.
One day, this past January, he had gotten off at his usual stop and couldn’t find his office. So he kept going around and around the block, in the middle of the freezing winter, for four hours. One of his colleagues had left the building to go to lunch and ran into him on the street. And that was his last day at work. After that, we went to many doctor’s offices until we found one who had an answer for us: posterior cortical atrophy, brought on by the cancer. And there were other diseases at play, too—dementia, Alzheimer’s—diseases that affect everything: his eyes, memory, logic. It has taken everything from him. He is a vacant shell.
It’s been eight years of this. Eight years of keeping it together. I wake up many times at night because he can’t find the door if he needs to go to the bathroom. He gets out of bed and stands against the wall until I take him by the hand. My alarm finally rings at 6:00 a.m., and I start by telling him that he needs to shave. Sometimes, he shaves and then he does it a second time because he’s forgotten. I wash him. I dress him. He hangs around—usually just sits on the bed—and watches me get ready. We go downstairs together and I turn on the TV for him, and then I give him something to eat. I have to cut up his food into bite-size pieces. After, I give him his medication. Then, someone comes to pick him up and drop him off at the adult day care center, and I leave for work.
At work, I go to meetings, take calls. I manage at least four or five projects at any particular time, and most of my days are nine or ten hours long. I always work through lunch. It’s not the type of job that you walk out of the building and be finished—I take work home with me. My job as a structural engineer is particularly important because I have to essentially make sure that a building will stand; I design its skeleton, its backbone. Any mistake is potentially fatal at worst, or hugely costly at best.
At the end of my day, I pick my husband up from the center. This last week, I found him in tears. I gathered from what he was saying that he’d been crying because he thought I’d been in a car accident and died. He’s deeply unhappy at the center, but I have exhausted my options. I used to have an aide come to our home to care for him. He couldn’t handle that because he became paranoid and saw her as a threat, as a foreigner who was trying to steal from him. I came home one day and she was in tears—he’d gotten agitated and hit her. But when he was telling me what had happened, it was the aide who had hit him.
Once I’m home, I have to pay the mortgage, pay for both of my kids’ school loans, pay to put food on the table. I have to communicate with medical insurance, which is so, so tiresome. There’s a nonprofit that’s helping me to coordinate the documents that are required, but the paperwork is still endless. Every penny of what I make has to be accounted for, and anything “extra” is garnished to pay for my husband’s medical bills. It took me more than a year to figure out how the system works—who pays for what. It’s a full-time job in and of itself because it’s a bureaucratic system that puts a lot of pressure on the caretaker, me. In my spare time, I am the plumber, the handywoman, the maid, the cook, the finance person. For everything, the buck stops with me.
It’s a curse, what’s happening to us. And I feel very responsible for keeping it from affecting the kids.
My son is well out of college; he has a great job and lives with his girlfriend. He is not as invested as we are because he’s not around now. But even when he was living at home, he lived in his own space, emotionally. That’s how he tried to protect himself, by being kind of aloof. Chelsea thinks that he’s not compassionate. She just graduated from college, and she lives at home for now. She’s only been here for three months, but she is struggling a lot. I’ve noticed that, to console herself, she goes online and reads what other people say about this sort of disease and how they handle it. Often, what she finds is upsetting. We differ in that I don’t feel like I need a support group. Other people’s stories don’t help me with my everyday life. I don’t have the time to stop and internalize what’s happening, and that’s how I cope. I find myself to be, mentally, very strong. Chelsea is young, and she is struggling to accept what has happened to her father. She has a lot of emotional breakdowns, and I don’t know how to console her. I suffer the same way, but I hide it better. I have been able to keep it to myself. I can’t even cry. It’s been a long time of keeping it together.
I don’t know what’s saving me. Maybe a bright hope? I’ve always believed that tomorrow will be better than today, but I don’t know what that looks like, for us. I feel that my energies are waning. I give and give, and I have to dig deep within that inner well to find the strength I need to make it through every day. But I fear that one day I’ll reach the bottom—I’ll find that I’ve run out of strength. What will happen then? Of course, I can’t dwell on that for too long. I have to move forward. That’s what makes life beautiful: all the obstacles and curveballs you’re thrown, everything you’ve worked hard to achieve, all the strength you’ve mustered to go on when you didn’t think it possible. Sometimes, when you look back, it looks like you’ve made a real mess of things. But you have to accept everything as part of the beauty of being human. In a sense, it all turns to gold.
Helena, thirty
I didn’t sleep at all in the hospital bed the night before Ronan was born. They’d hooked up a monitor to my belly, and his heartbeat echoed throughout the room. My breath would catch with every single flutter of his heart. I couldn’t wrap my head around it—that he would be here soon, that we would b
e a family of three. When he was born and they plopped him on my chest, I think I was in a state of shock that gave way to delirium. When I wasn’t trying to feed him, I was watching him sleep in his little bassinet, never more than a few inches away from me. And even though I was exhausted and in tremendous pain, I couldn’t sleep. I felt like I needed to protect him, to watch him constantly.
They kept us in the hospital an extra day because I was Group B Strep positive, and I had been induced due to a high leak in my placenta. Although Ronan had gotten a full course of antibiotics, they wanted to monitor him. I felt like my body had failed, like I had put my son in danger. So I felt a tremendous responsibility to never abandon my post—to always keep a watchful and protective eye. But I was struggling.
My milk hadn’t come in, and Ronan was a sleepy one. He wasn’t getting much to drink—he couldn’t latch—and in a panic, I told our nurses that we needed to supplement him with formula. Instead, a lactation consultant came to talk to us and spent about five minutes going over the basics of feeding. She gave me a nipple shield and told me to keep trying, and whoosh, was gone. I wasn’t being heard—try as I did, I was sure that Ronan wasn’t getting any colostrum. I pumped and pumped for hours at a time and nothing came out.
* * *
The day that we were supposed to get discharged, my husband, Alex, brought in the stroller, and we put Ronan in its bassinet. Against the pristine (twice-washed) bassinet cover, he looked… yellow. I called in the nurse and told her as much, but she quickly dismissed it. I persisted.
“Well, there’s no harm in checking again,” she conceded, and went off to get the apparatus that checks the skin for jaundice. And sure enough, the test showed that he was in intermediate-high risk. We were discharged nonetheless and told to check in the next day with his pediatrician.
At the pediatrician’s, the blood test showed high bilirubin levels. We were told to get him back to the pediatric ER, where he would be processed and then put into this glass incubator that emitted the equivalent of the sun’s UV rays. As I understood it, these would help Ronan’s liver “burn off” the bilirubin. There was another mom with a “bili baby” in the bed next to ours. She came in a few hours after us, and I could hear her crying into the night. Alex and I slept on a hardwood “bed” not much wider than a park bench, next to Ronan’s incubator. In the meantime, I pumped. And then I pumped. And then I pumped some more. And in my gut, I knew that he was jaundiced because he hadn’t gotten enough to eat. Because I had failed him. Again. And he was only four days old.
But his bilirubin levels did come down, and we were discharged the next day with express instructions to check back in two days. We went back to the doctor’s office with a lightness in our step, happy to put the last few days behind us. The follow-up news wasn’t good, though—his numbers had increased. His liver wasn’t burning off the bilirubin, and I charged myself with figuring out why. I read everything I could get my hands on—articles about rare diseases, about the effects of high bilirubin on a baby’s brain, an article by a mother who, much like me, had been ignored when she’d asked to supplement her baby with formula. The baby had become jaundiced, lost a lot of weight, and was now a toddler with severe physical and developmental delays.
You should have insisted, my brain told me. You should have fed your child. You should have listened to your gut. You didn’t protect him.
My husband, a doctor, tried his best to convince me that our son’s liver just hadn’t matured yet. I’d been induced, likely before Ronan was ready to meet us. And so we just needed to be patient.
But all I could see was his skin. I convinced myself, with each passing minute, that he was either getting more yellow, or less yellow. It was a terrible seesaw—I distrusted my brain, my eyes. In every moment of the day, I was solely preoccupied with Ronan and the color of his skin and eyes. When we went back to his pediatrician’s office to recheck his numbers, they told us they had risen again. Risk averse, the pediatrician sent us back to the pediatric ER.
I was in shambles. My hands shook as I paced the waiting room, my mind wandering to everything that I’d read that could be wrong. Finally, the pediatric ER doctors consulted a gastroenterologist, who consulted a hematologist at a different hospital who, without laying an eye on our son, told us that we should put our ten-day-old on phenobarbital, a serious anti-seizure medication that had been used to lower bilirubin in infants in the 1960s. My husband was livid. He pushed the doctor for answers—answers she didn’t have. She was just the messenger. “You can always leave and not give him the medication,” she said with a disinterested shrug.
And that’s what we did. Over the next several weeks, we went back to the pediatrician and had Ronan’s heel poked, his blood taken, and his bili levels checked. I supplemented him with formula while I pumped day and night to get my milk supply up. I didn’t sleep. I didn’t think about anything but my son. And whenever our cell phone rang—the doctor calling to let us know the results—I felt a fear so overwhelming that it was unlike anything I’d ever experienced before. I would hide in the next room, my hands over my ears, my head in between my knees, and rock myself back and forth until the call was over. Sometimes I could hear Alex “whoop” in the next room, and I knew the number had come down. Other times, it was the elated look on his face—over two weeks it was obvious that Ronan’s bilirubin was coming down. His color got better. My husband told me he was happy to finally be putting this behind us. My mom was relieved, too.
But while my mom was in the kitchen, while Ronan slept, while Alex showered, I went online and looked at the what-ifs What if he has brain damage? What if we waited too long to feed him? What if he can never run, never play soccer? Alex always dreamed of playing soccer with Ronan. And I took that away from him. It is my fault.
Once the bilirubin scare passed, my brain frantically sought the next thing to worry about. Until Ronan was six months old, I was convinced that he had cerebral palsy. I looked at the way that he used his hands and feet—unevenly, I convinced myself—and was certain that his jaundice had caused it. And when I managed to dodge that fear for a few minutes, I began to wonder: Well, if he is using his arms unevenly and if it isn’t due to CP, what else could it mean? So I googled it and found a study that showed a connection between movement disturbances and autism. A connection between head lag and autism. A connection between… anything… and autism. And when it wasn’t CP or autism, it was something, anything else—meningitis, measles, cancer, IgA nephropathy, cold sores—and its accompanying rationale. Meningitis, because Alex works in a hospital and he brings home germs. Measles, because there’s a measles outbreak in New York, and we live next to a hospital. Cancer, because I’m overusing Purell and children who are not introduced to viruses and bacteria enough as babies have higher incidence of childhood cancer. IgA nephropathy, because it runs in the family. Cold sores, because everyone has them and could unknowingly pass them on to my baby.
And even though my brain understood what was happening—that my anxiety warped my thinking, that I saw everything through an incredibly cloudy and unhealthy lens—I still could not help it. I could not help it enough to make a difference in my quality of life. And even now, it is uncomfortable. It is scary. Because I feel that I could be dragged right back down to that hell at any moment. People close to me, people who should have known better, told me to “get over it.” They told me to get on medication because I was “not normal.” Told me that I was doing motherhood wrong—that they had done it a certain way, and it was good enough for them. Did I think I was better than them?
When I saw the effect that I was having on Alex, who started crying one night when he asked me if I was suicidal—“I’m sorry, I have to ask”—I began to feel really, really lousy about myself. I began to feel that I was hurting my son by being sick like this, that I was dragging my husband down with my dysfunction. I began to hate myself for it.
So, yes, I did think about suicide. And then I thought about my husband, whom I love w
ith all my heart, and I thought about what would happen to him if I went through with it. And I resolved to stay and get better, because I cannot fathom a world in which I cause him pain.
In the midst of this, I sought therapy. I called my ob-gyn and was referred to a center uptown that deals specifically with postpartum issues. My therapist there was awful—borderline unethical. She canceled more than half our appointments at the last minute, and told me (several sessions in) that she was actually still waiting for her license to practice and shouldn’t charge me for sessions. When I emailed her to break off our relationship, she told me that it was just as well because she’d been thinking a lot about me, and “that’s often not a good sign.” She felt that a “higher level of care” was needed. Of course, that sent me into a panic. Was I losing my mind? Was this psychosis? Was I really doing so poorly that a doctor specializing in postpartum issues couldn’t help me?
In that flurry of fear, I got another referral. When I called the office, I was told that the wait to see the doctor was six months. Six months. In New York City. In 2018.
But I did finally luck out. I found a lovely psychologist whom I learned to trust. And we started working on me, which felt good. Hard, but good. And then my husband’s employer switched insurance, which landed me out of network for my doctor. And even though she petitioned to join, it has now been over five months without word. Five months without access to my therapist.
Craigslist Confessional Page 23
