Oh my. I have so many thoughts on this book. I must have requested it a while back because it popped up on publication day in the Libby app to download. I didn’t really remember what it was about but it had a cool cover, it said the woman’s novel was a NYT bestseller and I love memoirs and reading about people’s relationships so I started it right away.
It is so hot and I haven’t been able to sleep so I really got into this one. The book starts off with the author as a high school student meeting her now husband at a record store. She was pretty straight laced with little dating experience beyond what seems to have been a not very physical relationship with a boy who shared a lot of interests (and a haircut!) with her. The man she met was almost 25, a high school drop out and working part time in the record store. They start dating. She doesn’t know his last name until she sees it on his mail when she goes back to his house a couple dates in. He claims he doesn’t know she is still in high school despite her telling him about college acceptance letters (!) until they have been dating a while. She seems to believe this and I think as a 17 year old, it would be pretty common to but pretty much anyone over the age of 22 can testify how much high schoolers look like babies. Where did he think she was between 8-3 pm each day? They are married now and for adults, it isn’t a huge age gap (I’m seven years younger than my husband but we met when I was almost 25 and halfway through my masters) so I was willing to give them the benefit of the doubt. I have no idea what her parents were thinking though. She must be almost exactly my age and I know my parents would not have wanted me dating a grown man!
So I am about a quarter of the way in and she’s talked about some insecurities about his dating past (seems normal for a teenage girl) and his drinking and drug use. He doesn’t seem to ever work full time or much at all and he follows her to college. She basically lives with him from her freshman year on. He starts getting mysterious illnesses that take up a lot of time. He tells her of a troubled childhood with divorced parents, big moves and a childhood friend dying. The book goes back and forth between their early years together in the early 2000s and a more current timeline where he is very mysteriously ill. They go to doctor after doctor and no one knows what’s wrong with him. One doctor suggests possible schizophrenia or some schizoid variant but as we all know from this book, psychology is not a hard science and it’s mainly self-reported.
To me, it is very clear she is making some excuses (either unconsciously, trying to head off criticism or at her editor’s suggestion, I don’t know) about things in their life that are a little off–he didn’t know she was a child in school when they started dating but she didn’t know his last name for a few days! He doesn’t work but he doesn’t feel well! The kids are stressed and sick about their father’s illness but he is just that sick and they don’t know why.
It is pretty clear to me that there is a pattern of his illness (at least what she is reporting here): she leaves the house for an hour for a meeting and turns off her phone, he throws up “blood” and she has to rush home to find “bloody” vomit and “undigested” ramen all over the house. They rush to the hospital and it’s agreed that the “blood” is really the large amount of red juice he drank that day.
Somewhere around this point I thought the book was going to shift and it was going to be become about living with a man who is a con artist or who has chronic factitious illness disorder (what we used to call Munchausen’s syndrome) but I keep reading and it’s just more of the same. I finally read the blurb of the book and find out it was billed as “A turbulent romance meets harrowing medical mystery: the true story of the author’s twenty-year marriage defined by her husband’s chronic illness—and a testament to the endurance of love.” Oh no, oh no no no.
This a hard book to talk about because if the major red flags and issues are based in reality, that means this man really has been suffering for no reason for years and that’s awful. If he is the manipulative predator I think the book describes, then he has been abusing his wife and their whole family for years. Or less likely, they are both enmeshed in some sort of mental illness together or are con artists and want to profit of it? There is no “winner” here.
As I said, I have a lot of thoughts so I’m just going to list out more of the red flags. Again, at many points she does seem to have doubts or guess that readers may too but she always explains them away. I also don’t understand how she was able to complete grad school, write books (including a fictionalized account of her husband’s childhood that takes her nine years to write before he reads it) and have a career while dealing with his drug and alcohol use and then their children but then again he doesn’t really seem to work so I guess she had to.
- They think he might have Morgellons disease which is highly controversial and thought to be fraudulent. It’s when filaments come out of the person’s skin. He has a lot of rashes but and frequently shows her videos or pictures of things that come out of his wounds when she’s at work, dealing with their children or sleeping.
- They live in NYC and she is working several jobs including one she really seems to like and might lead to something and then he decides they should return to Florida and live in his father’s empty condo. He doesn’t work much except for a short stint as a fake NYC cop doing patrols and she works a lot and NYC is expensive so they move to Florida.
- Minor but she talks about him and his friend Ashmat shoplifting Star Wars figures from the K-Mart in St Mark’s Place NYC. Kmart famously didn’t open until 1996 when he would have been around 20. He moved to FL with his dad when he was 12.
- He says his friend Ashmat died not long after he left for Florida when a grown woman attached him to a rope and dangled him off the side of an apartment building because she lost her key and wanted him to climb into the building via another floor. He was 12 when he crashed to the ground and died. None of this makes sense, it’s NYC, go sit in a coffee shop and wait for a locksmith or a friend with a key.
- He says an ex girlfriend was raped and murdered on her way home from work before he met the author. Of course, these things unfortunately happen but what are the odds it happened to someone he knew?
- He first got sick when she was pregnant with their second child. She was on tour with her first book and he was home with their older child and he called her to complain about a rash on his neck. The doctors can’t figure out what it is or how to treat it. At this point the doctor points to a nasty rash on his elbow and asks her if he used needles to shoot drugs. They are emphatic that while he has a long history of drug use, including heroin, he has never done intravenous drugs.
- She says he used drugs to “medicate his feelings” and when he stopped, his feelings “burned through his skin”.
- He has an emotional affair with an ex girlfriend around the time she finds he is drinking heavily and doing drugs. The discovery of this is right before she leaves the state to go to a professional conference. She comes back, talks about leaving him and he apparently takes pills in an attempt at self harm.
- She was going to be an artist model at college to pay the bills (again, he barely if at all works) but he throws a fit, she says he’s protective and goes to work at a bakery instead.
- He always has an excuse not to work while she is in college full time and some how manages to find work herself. She feels like he is resentful of having to work and admits she walks on eggshells around him.
- She helps him get his GED, he enrolls in community college but then has some issues with his teachers and stops.
- She seems to be failed by adults around her. As a sophomore in college, she talks about her issues with him after he gets out of the car on the way home to her family’s house for Thanksgiving and doesn’t want to go. The family friend just says that “relationships are hard”. She’s 19!
- He repeatedly tells her that heavy drinking is the only way his rashes get better. He also says that sex and specifically her preforming oral sex on him (!!) helps to relieve the chronic pain he is in.
- One day out of the blue, after they return to FL to visit family for the summer, he says he was sexually abused but won’t tell her any details.
- He frequently awakens her from sleep at 3 am to tell her he is ill in some way; vomiting, itchy, or leg cramps and claiming he has called for her but she didn’t hear him. They live in a series of apartments and what seems to be smaller houses.
- He stops working after buying books to become a real police officer and when she confronts him about not working or seemingly doing anything with his days, he shoves her and yells that he is stressed because he has to (remotely) help his dad and reveals that his dad is the one who abused him as a child. I don’t want to make light of abuse but this revelation comes again when he is confronted about his inability to do anything during the day and years after he hinted about it. He says it happened when he was 13 and they were sleeping in the same bed. She says that he was still young enough to sleep in his father’s bed but, personally eight or ninth grade seems very late for that sort of casual “climb into bed with dad”. He comes back to this allegation and dramatically reveals it to his cousin after she delivers a eulogy about how close she was with her uncle (his father) and how great he was. Again, you always want to believe survivors but this and timing on top of everything this seems very convenient. He is often, in my opinion, very prone to making big announcements whenever the author is legitimately upset about something going on with him (his substance abuse or refusal to work) or is busy or successful in her own career.
- After the revelation about his father they decide to move back to FL and live in his father’s empty condo which seems to be what Aaron wanted all along. She talks about how much she loves her job in NYC but agrees to go. After all, it only makes sense financially, Aaron doesn’t bring in money and her various jobs don’t pay much.
- For once the author is sick and has to go to the doctor. She kept one of her NY jobs remotely but doesn’t have health insurance. She ends up with a relatively small (for medical out of pocket services) bill for $2,700. Neither of them have the money to pay (although her husband at this point was making by selling off collectables in his father’s condo, it doesn’t seem to occur to them to do that for the medical bill) and she doesn’t qualify for aid. Rather than get on a payment plan, they just don’t pay it and it wrecks their credit for a few years.
- At this point Aaron is in a “band” that rehearses in a “warehouse” and she is never allowed to see them play because it was a “guy space” for “stoners”.
- He also says that he found that his dad had “researched” incest on his computer but then her husband said he “wiped it”. She didn’t see this herself. She finds it “creepy” that her FIL knew what incest was.
- During this return to FL they get engaged, her parents, bafflingly, are excited about this. She gets into grad school and pays for the wedding by selling off collectables.
- The morning of the wedding, Aaron is late because he says he saw someone get hit by a car and had to give a statement to the police. What are the odds? He says she was hit with such force she was flung across two lanes of traffic. The author worries it is a sign. They are late to their wedding and he reveals he didn’t bother to shower for five days despite her repeatedly asking him to.
- They run into EMTs who remember the previous false alarm he had when attending to his latest false alarm and she marvels at how much the EMTs take it in stride that this keeps happening to them.
- The doctors think he has parasites or cellulitis. He seems to get worse during the full moon. They drive home and he manages to crack her windshield as they drive with his foot that he was pressing against the window for some u known reason as she drove.
- They think he might have Lyme, the test levels aren’t quite high enough. She also thinks he has Morgellons disease as well and she spends a lot of time researching both. He does not seem to do much research that he shares with her.
- They think his fillings in his molars might be causing issues so he starts to get them replaced but he apparently doesn’t get them all removed because he doesn’t want to.
- They go to a Morgellons disease conference in Germany that doesn’t yield much but more parasite talk and come back to a doctor saying that he thinks Aaron had Lyme disease so they decide to treat that. Another doctor says his problem isn’t Lyme but “psych”.
- His dad dies and he copes by getting high and snippy with the author. She takes care of all the logistics. His (I think half) brother dies shortly after and gets apparently buried behind their childhood home. A couple years later they drive around looking for the fancy house that her husband said they lived in as children and where his brother was apparently buried but they can’t find it nor is his father’s name on any property Aaron claims to have lived in. She thinks the house and cemetery must have “moved” or they have the wrong address and they give up.
- They move into a house her parents worry they can’t afford and he spends his day on eBay and smoking weed. She works and decides they should have a baby. They have issues conceiving and in the middle of it he leaves for a short trip to FL and instead stays for a month.
- She harmlessly flirts with a man while he is gone, tells Aaron she flirted with a nice man and he stops talking and eating. She has to leave to go to a family event in Vermont and he still isn’t eating when she returns. She wonders if he is punishing himself or her.
- She gets pregnant, she says its a “beautiful time” but also that there was a lot of worry and that she wanted him stop smoking cigarettes and weed before the baby is born. He gets a low level job and she berates herself for thinking that she wishes he could get a job that pays more and is more professional.
- The baby is born and Aaron talks about how much drugs there are at his job and how someone coerced him to get high in the middle of the work day. She was happy he had friends even if they all were doing hard drugs and smoking a lot of weed during the work day.
- It’s her parents’ fortieth anniversary and he comes home “sick” and has to go to bed, disrupting the party. A few days later reveals he was just high on heroin the day of the party. He drove high and didn’t shoot up but he snorted it. She is mad but he says he was “trying to die” not get high on her parents anniversary that she hosted.
- More therapists, including one who says they have incompatible lives and lifestyles. She says Aaron is a “limited person” who never got treatment for his drug addiction. She seems reasonable to me but the author’s response is to say that they are deciding to have a second child. The therapist says it’s “entitled” to have a baby when their marriage and finances in are a bad place. No kidding.
- Her mom tells her it is her job to look after his mental health because “that’s what marriage is” but offers to let her and their child stay for a bit.
- Aaron seems to be working but they are close to bankruptcy. He decides to be come Catholic and attends classes for a while. They sell their car and manage to keep their house.
- Her dad is dying and moves in with them for hospice. While she is making arrangements with the hospice workers, Aaron interrupts her to talk about how his stomach hurts. She redirects him and he keeps begging for her attention. She tries to focus on her dad, brother, SIL and hospice staff but he keeps begging for attention even more. She goes upstairs with him and he shows her a noose made out of old towel (???) . She keeps begging him to let her deal with her dying father for a few minutes. He is very dramatic but “lets” her go.
- Everyone notices how bizarrely Aaron acts when they are in town for her dying father and she admits there are a lot of issues. They discuss how her dad might have had issues with depression and suicidal ideation as a young man before he met their mother.
- They keep thinking Aaron has parasites and find a doctor to treat them. Aaron shows her a video of a bug he claims came from his testicles.
- She takes care of the children and is working at home during a snow storm and he comes home driven by a neighbor because he spontaneously and without telling her went for a four mile walk without his phone during a sub zero snow storm. He said he left because she “didn’t want him there” and made a face when he walked by while she was working. She deals with the kids and he comes down and tells her he just took a “fatal dose” of his medication. They call 911 and he admits he took a few Ativan and some Aleve.
- He tells her he once broke a thermometer in his mouth as a child and swallowed the mercury so maybe that’s something to do with his issues?
- He loses and gains weight a lot. He still gets weird rashes and redness.
- He gets sick on his birthday after celebrating with their children.
- They muse that maybe he has a parasitic twin?? More parasites, maybe from his straight edge tattoo days.
- He drinks more and more. The doctors says it shouldn’t help but he says it is the only thing that does.
- They go to France for her work, he remembers a column that they see but claims to have never been to France. When they get back he somehow got a box of family photos in the mail while they were gone (?) and in it is a picture of him in front of the exact same column as a child, in France. He claims he must have forgotten.
- They get back via NYC and see a doctor while they are there who does some tests and asks if the marks on his legs are from using needles. They are both indignant and say it is from his skin condition. (Second time a doctor has said his marks look like needle tracks).
- She turns forty and that morning he wakes her up “naked and manic” and she tells him she needs to sleep. Later he claims he doesn’t remember waking her up. She wants to have a party with her friends and he is “moody and sick”. They fight and she leaves to have fun.
- He refuses to go on the family’s trip with her family in Vermont for her dad’s belated memorial at the last minute and again she has to make excuses.
- More headaches, more tests, he says his nipples are leaking. Nothing shows up on any MRI or test.
- He gets a job helping people get benefits and does home assessments. It goes along well for a while but then his boss puts him on probation because he was making “miscalculations” on the forms. They would initally be correct but then he would “correct” them on the final form, messing up the work for an unknown reason. Boss seemed to think it was him second-guessing himself but it means people could not get the help they need. Rather than improve, he decides to quit. The author thinks it might be the stress of seeing his mother.
- She is very divided on whether it is okay that she would like him to have a job. Is it anti-feminist? He does take care of the children, even though as one of her sons points out, he is too drunk by 3 pm to pick them up from school. Luckily there is a school bus available.
- One time, near Christmas he “can’t handle” being around their son and goes to take some random pills and they end up physically tussling over the pills in front of the child.
- She takes the kids to see a movie in the park, he refuses to go and deliberately ignores them when they leave. Before they even get to the park he calls her literally moaning and crying that he’s sorry. She thinks he must have harmed himself and calls the police. She talks to him and he says she shouldn’t have called because he was just kicking things in their home and didn’t take anything. He claims he called because he broke things by accident and he knew she would assume that he did it on purpose and be mad. She comes home with the kids, the police come, they send the police away and since all this took like 20 minutes she ends up taking the kids to the movies.
- He begins to smell like syrup. No one knows why, tests for “maple syrup urine disease” are negative. They don’t check to see if he has been taking large quantities of fenugreek which can also make you smell like syrup and is easy to find at any health food store. Another medical mystery.
- He gains weight, doesn’t have the coronavirus, has a large but unscarred liver.
- The book ends with them selling their house because they can’t afford it, the pandemic and him drinking heavily “to live”.
Some of it does seem like doctor error or random occurrences–he has trouble breathing, they go to the hospital, see a spot talk about what it could be since he was a heavy cigarette and pot smoker for many years and at a follow up, the spot is gone. Isn’t a likely explanation that it was some inflammation that went away when he look the medication they gave him? Instead they act like it is proof his body is some mysterious force.
I truly believe some people do have bad luck. Our medical system is horrible and many people fall through the cracks and suffer. I don’t believe that her husband magically gets sick when something happens to take her attention away from him be it work, pregnancy or child rearing, caring for her dying father. I don’t think that drinking so heavily her child knows he can’t be trusted to pick him up at school is what keeps him from having more skin problems and getting sicker. No therapist can agree what is “wrong” with him, some think it is just ADHD and are concerned with his chronic heavy drinking. I get the impression some doctors and therapists think something bigger is going on but they seem to change doctors and treatments a lot. A couple doctors ask her about what looks like track marks and she keeps saying it is a rash. Isn’t the simplest answer the most likely? He has used heroin in the past. Why does she believe him when he says he doesn’t shoot up?
Any one of the above would be a huge red flag. All together is just beyond comprehension. Due to how she structured the book the timeline folds in on itself a bit but I’ve tried to piece it together as chronologically as possible above.
I feel bad for her because she was a child when they met and she seems to blame herself for all of this. I feel horrible for their children because they know how bad off he is and yet it keeps going on with no apparent end.
I wish she had stayed with the high school boyfriend who seemed very much like her and ended up in NYC the same time she was there doing similar work—she had a little “Sliding Doors” moment when she ran into him as an adult. . Or stayed single. Anything. This is no way to live. She’s had a hard life and I’m not sure it’s of her own doing.
Apparently her early novel based on his life was made into a movie with Ethan Hawke? This is never mentioned in the book.