My little brother, Joseph, known affectionately by family as Jose, died at the age of 37 on Monday May 18th, 2021. It’s taken me this long to gather the strength to write about it. I’ve experienced a lot of horrible traumatic events in my life, rape, harrasment, assault, violence, incredible stress, but this is the worst of them. I think this may be the event that haunts me forever. It certainly has for the last six months. I wake up ruminating about it. I go to sleep at night wrestling with images of that weekend in Salem, Ohio. Conversations play out over and over again in my waking and dreaming life. This is what PTSD is, feels like, I get that better now. This is what millions of people around the world live with and struggle with. It’s grief but it’s more than that. It’s the feeling of learned helplessness and hopelessness. The cracking of my normally optimistic belief in the goodness of others. It’s the torture of “what ifs” and my brain trying to make sense of something that doesn’t fit with how I used to see the world. I am sharing here with the hopes that by breaking my silence I can help other people somehow avoid whatever set of things led to this tragedy, and also I hope that I can begin to heal, to find a path out of this darkness. There was no funeral for my brother, at least not one that I know of, so this is my chance to say a few words.
Growing up the oldest child of three, a latch-key kid in the ‘80s and ‘90s, with two working, stressed out, and often abusive parents, I don’t remember a time when I didn’t feel like “momma bear” to my younger siblings. If you wrote a definition of a parentified child, it would be me. When begging my father to step in and protect me and my siblings from my mother’s rage, her waking us up for school when I was six, bright red face so angry that drops of spit hit my face, yelling at me at full volume, his response was “You have to be the grown up. She is not well”. My mother’s rage would come out of nowhere, seemingly unrelated to anything we were doing. Unless of course we were feeling distress or in need of comforting or in pain- that would definitely get us screamed at or hit. To our betrayal, my father would pretend to be empathic in private with us and then delight in our emotional pain when our mother would abuse us. I didn’t understand sadism at the time but do recognize that this is what that was now. My father would drive 90 miles an hour through the darkness and rain with me in the passenger seat, a glass of scotch on the console, delighting as I begged him in terror to slow down. This is sadism- delight in the pain and fear of others- particularly grotesque when it’s aimed at your own small children. It would take me more than a decade to realize that not only was my father telling me to be the “grown up” a completely unrealistic position to put a six year old in, but his infantilizing of my mother was also deeply misogynistic. In the blocks that I walked to first grade alone, I would try desperately to calm down enough to not look like I had been crying. I knew instinctively that I needed to hide the abuse in my home from my teachers and school and felt a deep sense of shame. I also vowed to protect my younger brother and sister the best that I could, to be the grown up.
I had a lot of things going for me that provided me some resilience. I was profoundly gifted, skipped the second grade, and scored highly on school exams and standardized tests without studying or even really paying attention in school. This counterbalanced the abusive and neglectful home life that I had, allowing me to do alright in school getting mostly As and Bs. Although I do wonder how much better I could have done if I had a supportive home life where my parents knew what our homework was instead of just raging if we didn’t do well in school. I also was fairly unmarred by my family’s history of mental illness. Depression, bipolar disorder, alcohol and drug addiction, and suicide runs on both sides of my family. I have struggled at times with short term bouts of depression but otherwise have been mostly ok. My brother was not quite as lucky as I was. He was smart and capable and fun loving, but was also hyperactive, disorganized, and had a hard time paying attention in school. If it had been the 90s and not the 80s, he certainly would have been diagnosed with ADHD. His grades suffered and my father was constantly berating him for it. Eventually my parents sent him to a military boarding school in the 9th grade where there was extreme abuse, hazing, and serious drugs. He talked about this experience with me and it was clear that this school was profoundly damaging to him.
As a kid and teenager, sports and his natural athleticism provided an outlet and a boost for his self esteem. His daredevil nature and incredible natural balance made him extremely talented at skateboarding, roller hockey, and snowboarding. When I think of my brother, I think of him flying down a hill in our neighborhood or a ski slope, easily, masterfully, without a care in the world. As kids we had many fun adventures together- playing in the woods and creek behind our house, catching salamanders and turtles, running the neighborhood with other kids, building forts. I remember us running around indoor tennis courts, chasing each other, giggling goofily “you stole my cheese cake”, “no, you stole my cheesecake”. To my grandfather’s homophobic horror, and everyone else’s delight, I would dress my brother up in my ballet tutus and put on performances, twirling him around. My brother and I also had a fraught relationship at times. It was often one-sided- I don’t think he’s ever gotten me a birthday card or called me on my birthday- and he was very entitled- bullying me, insisting on watching what he wanted on TV, picking the locks on my sister and my doors with bobby pins and stealing from our piggy banks. I think beneath all of the petty fighting neither of us harbored any true animosity towards each other, however, and we loved each other, as two people with a long shared history do, as comrades, as siblings.
Things went downhill for my brother pretty quickly when he was a teenager. After he came back from military school he got into using and selling crack and coke. He was in trouble a lot both in school and with the law. He started hanging out with friends with criminal records and they stole from my parents- TVs, laptops, cameras, and wrote checks from my parent’s checkbook forging my dad’s name. It was unsafe and scary in my home. We had a 19 year old with a record of armed robbery living with us for a while. I can still remember the smell of this guy’s cologne- it smelled like pure evil to me. Saying that my parents made bad parenting choices is an understatement when it comes to this period of our lives. But again I think there was some element of delight and power that my father took in me feeling unsafe in my home. I continued to be a surrogate parent, driving my sister and brother around, helping with homework, playing therapist for my parents’ intense and volatile marriage. I thought if I could just take on enough, be perfect enough, I could keep the walls from collapsing in on us. I remember pulling my sobbing little sister into my arms during particularly bad fights between my parents and whisking her away to my room to comfort her.
I went away to college in another state for a few years and then took a technician position in a lab in San Diego before returning to Pittsburgh to start medical school in 2003. At that point my parent’s marriage was culminating in a dramatic parting and ugly divorce. My brother was 19 and had graduated highschool. That fall he got into a terrible car accident while speeding and drinking and driving. This didn’t surprise me since my father had been modeling speeding while drinking and driving since we were kids. The car accident left him paraplegic. He spent three months in the hospital attached to my medical school recovering from a spinal cord injury. I would go between classes and the hospital trying my best to help manage his care with the nascent medical knowledge that I was acquiring. He had super high fevers “of unknown origin”- meaning his doctors didn’t know why this was happening. We often weren’t sure if he would live. My mother at that time had developed a serious drinking problem- I think to deal with the guilt she was having over her affair- and had multiple suicide attempts. My sister asked to live with me in my studio apartment (she was in highschool) because my parents were so neglectful and the house was completely unsafe, and I agreed. My first two years of medical school were some of the most stressful years of my life- worrying about the health and life of both my brother and mother, being the pseudo-mother of a teenager with no money (we lived off of $15,000 in loans and the money my sister made waitressing), and trying to pass medical school. This was all happening while my father was off getting married to his fourth wife in Italy and honey mooning on African safari. My grandfather on my mother’s side also committed suicide during that time, by gun in his front yard. I had been trying to help him with his medication regimen for bipolar disorder and felt extremely hopeless that we failed to keep him safe. I was divorced from my emotions a lot of the time and I think that most of my classmates, besides a few close friends, had no idea what I was going through. At one point, one of my classmates did present me with a card signed by many of my medical school classmates acknowledging the difficult time with my brother in the hospital. It was like I was frozen and there was a wall of ice between us. I was grateful for the card but I was in such a dissociated place that I couldn’t connect with her or the moment emotionally.
My brother eventually recovered after his car accident and left the hospital but became addicted to Oxycontin that he was prescribed for the pain of his injuries. He had also developed severe bipolar disorder with psychotic episodes. He at one time spent an entire year in an inpatient psychiatric ward following a psychotic episode where he thought he was “a sun god” and held his face to a hot burner on the stove as part of “ninja training”. I think it was a combination of things that led to my brother’s mental health decline- abuse, neglect, unlucky genes for mental health, the devastation of being such an athletic kid who could no longer walk, and opioid addiction. He spent years trying everything from snake oil remedies to magical thinking to no longer be “crippled”- his and my father’s words. I don’t think he had any way to feel self esteem after the accident. This is part of the toxic masculinity culture and ableism that was/is so destructive.
I tried extremely hard to help both my brother and mother in the years following those awful years, both from a medical perspective and emotional support perspective. I found treatments centers, and found relatives that would help my mother, I talked to doctors, I looked up medications, I drove both my mother and brother to rehabs and facilities. I went beyond burnout to some other world that exists beyond stress and carried the weight of the family world on my shoulders. It was practically impossible for me to both do this and complete my studies but I knew things were so much harder for my mother and brother than me that I gave it 1000% effort. In 2011, I graduated from the Pitt MD/PhD program, not coincidentally getting my PhD in neuroscience in the psychiatry department. I was both trying to help my family with their mental health at the same time that I was studying mental health disorders in the lab. After several decades of trying, I realized that I wasn’t able to fix any of it really and it had never been my place to do so. I had deep seated anger and resentment towards my parents for all of it. They had never taken any responsibility for what happened or apologized for any of the abuse, neglect, or broken promises. I went from going home every weekend in college to spend time with my parents, to only Holidays in grad school, to skipping Holidays eventually in my thirties. There was one Thanksgiving where I just couldn’t make myself show up anymore despite the great societal and family pressure of “family is forever”. I saw my brother, Joseph, only occasionally- once every year or two. His life never really turned around- he lived in assisted living homes- mostly watching movies all day. My father constantly complained that he was overweight and not ambitious- which was so far from my brother’s biggest problems and complete denial of his mental health issues. My father only really cared about what his children’s appearance or accomplishments said about him to the world. It wasn’t surprising that he could only focus on how my brother was letting him down in that regard, having no empathy for the bad hand my brother was dealt in life.
Jose had some ongoing physical health problems due to being in a wheelchair. He had recurring kidney stones, which my friend Michelle, a Urologist who went to medical school and University with me, would periodically surgically remove. He also had some bed sores on his back side because he would sit or lie for so long in the same position and couldn’t feel the pain because of his paralysis. I would follow along with his care long distance and make sure that he was ok and talk with my dad who primarily was taking care of his hospital appointments. So on Thursday May 14th, 2021, when I got a phone call from my dad’s wife, Paola, that my brother was in the hospital again, this time for surgical debridement (cleaning out) of bed sores on his back side, I was not particularly surprised.
The pandemic years of 2020 and 2021 have been pretty intense and traumatic for a lot of people and a lot of people have had weird vivid dreams. I had been dreaming of my brother every few months for years. Always in my dreams he was walking, which is so strange given that he had been in a wheelchair for almost 20 years when he died. My brother was various ages in those dreams, and the dreams were never particularly eventful. He was just somewhere with me, walking around. In the first few pandemic months of 2020 I started to dream of boats and islands and harbors. The island dreams I think clearly were about isolation in lockdown, and I think they were also about intergenerational isolation. The boat dreams were always of people fighting on them. In the first boat dream it was just me and my brother. My parents were somewhere but not really around. My brother and I were about 8 and 5 years old, yelling at each other. The sound was turned off on the dream scene and I could see him yelling at me but I could not hear anything. Time slowed down in the scene as well and I was looking into his big green eyes on his tan face with a little kid nose, the kind you have before it turns into an adult nose. And it was a picture of innocence. Those eyes were the most beautiful, green, innocent little kid eyes that I’ve ever seen. Many months and boat dreams later, including pirate ships and other violent boats, I came to realize with the help of my Jungian analyst, that the ships were word play for “hardship”. This was the hardship that had been passed down through my family.
I was very worried about my brother during the pandemic- especially with him living in an assisted living home. I kept meaning to call or stop by but never had plucked up the energy to do it. I had gotten the phone number and address from my dad’s wife in case I needed to check on him. I guess it’s a little woo to think the dreams were telling me to talk to my brother. But sometimes your subconscious puts together the pieces of things that waking you is trying not to think about or has some block to doing. Dreaming is without the “ego defenses” to get in your way of seeing clearly. I have felt tremendous despair about not being able to help my brother. There are so many things scientifically and medically that would have needed to improve for my brother to lead a “normal” life. We need better medications, better dual diagnosis treatment, better places for people with mental health issues to live. He needed therapy for his history of trauma and abuse and for creating a self image that wasn’t dependent on him being physically active and not in a wheelchair. He needed to not have my father in his life and definitely not as his primary support system. I know that it was impossible to help my brother and wasn’t my place even but I still feel tremendous guilt and hopelessness about how his life turned out.
After his surgery for his wound debridement I talked to his nurse and talked to him on an ipad. He seemed ok and his nurse did not seem worried. He was stable. So I was confused and surprised when Paola, my dad’s wife, was telling me that she didn’t think my brother would make it. Paola has been one of the only people in my immediate family that has been kind and I am tremendously grateful for what she did to help me that weekend. I thought that it was just my father being dramatic in an effort to manipulate me to come there or to talk to the family as he had done many times before. But then I found out that they had withdrawn care and put him on hospice. This made very little sense to me because from what I knew of my brother’s condition, he was very, very likely to recover. Yes, he needed antibiotics, and possibly some months of outpatient dialysis, but he had no terminal conditions. I called Michelle, my friend who had performed his kidney surgeries, the latest one only one month earlier, and she agreed that it was shocking that they had him on hospice- his kidney function had been completely normal a month ago and would certainly recover. I talked to my brother again on the ipad and when tears started to stream down my face, he said “why are you crying Christin?”. I said “I just miss you”. He said “it’s not your fault Christin, it’s not your fault”. My family had just left him there, without any treatment, to die alone.
I felt a rising sense of panic and that Friday, I set off to drive the 12 hrs to Salem Ohio to try and save his life. I called his nurses and doctors on the way there. The head nurse called me “honey” in this condescending tone to which I said “Do not honey me, I am a forty year old physician”. The woman in charge of hospice said what kind of doctor are you? Shocked I said “an MD, what do you mean?”. I could tell that my family had begun a campaign to discredit me to the hospital staff. I called all of my friends that could possibly help- lawyers and doctors in the middle of the night. My friends were amazing and texting anything they could think of to get court orders to stop what was happening. I don’t know if I could have made it through many of the things in my life without the support of my friends. Everyone was appalled at my brother being placed on hospice. This would never had happened at UPMC or any major hospital with reasonable care.
It’s only the second time in my life that I have called a friend in the middle of the night, the first time being in 2003 when my brother got into the car accident in the first place and I had been at a medical school Halloween party and needed a ride to the hospital to help manage his care- one of the most terrible and surreal nights of my life. My parents were in Russia trying to save their marriage and had left it partially to me to make medical decisions. My friend Eve saved me that night, woke up and drove me to the hospital where my brother was, and sat with me until six in the morning.
On May 16th 2021, I arrived in Salem regional hospital just after the sun came up at six a.m. with birds chirping and nurses switching shifts. I had driven all night. When I got to the hospice floor where my brother was, my dad was waiting for me in front of the nurses station. “Please come into this room, we need to talk” he said in the hushed tone of someone about to tell you someone was dead, but I could see the malice in his eyes. I followed him into a glass encased side room. Immediately after the door closed, he started growling at me and I knew that he had just faked that my brother was dead to get me to talk to him in that room. “Admit it!” he snarled “he’s not going to recover”. I got up to leave the room, I wasn’t going to put up with this. I walked to the nurses station to try and see my brother. “You are not in charge here” my father sneered angrily at me and grabbed my arm. Of course this was about control, not about concern for my brother or for me. He then cornered me and said “you are not well are you?”. The nurse was giving me a look like she was sorry and about to call security. I sidestepped him and again tried to see my brother. I said “I drove all night to get here, he wants to see me, and I want to see him, can you just let me see him?”. “No” my father said “not without talking to me”. Then hospital security asked me to leave and I left in the elevator. I got out into the parking lot, devastated, and tried calling my therapist. My dad then called me on the phone and said that I could come back up and see my brother.
I feel very grateful that I was able to talk to my brother that day. We got to say “I love you”, which is the most important thing you can say. There were many other things that I was not able to say to him or talk with him about including his wishes because my parents continually interrupted and tried to get me removed from the hospital. They had declared Jose incompetent for saying that Trump was president and for talking to jesus- which is ridiculous- he’s religious and half the country thought Trump was still president in May 2021. I have my brother on video being oriented x3 and capable to make his own decisions- this despite being on morphine and not being given antibiotics or dialysis. He had also been declared competent to make his own medical decisions just one month prior at UPMC by a board certified psychiatrist. My brother kept asking the nurses to turn down his morphine and they wouldn’t. They were intentionally snowing him. “Don’t worry” said one nurse who couldn’t have been more than 20 years old “we haven’t really turned it all the way up yet”. I was appalled. They were running a death squad. My brother being declared incompetent made my parents his defacto power of attorney as they were next of kin. His physician that weekend, who I think must have been a resident, initially agreed with me that he was competent. But when the power tripping hospice woman re-evaluated him, the resident demured. The hospice woman went into the room alone with my brother and I could hear him yelling “stop scaring me! stop scaring me!” outside of the door.
Michelle, my brother’s Urologist, got on the phone with the resident and told her that she thought he would recover to no avail. Normally, in a reasonable hospital there would be a a psychiatrist’s evaluation and a panel that decides whether someone is competent and treatment would continue until these judgements were determined. They would never just stop treating a patient without these evaluations in place. This hospital didn’t have a psychiatrist at all. I tried to get my brother transferred to Cleveland clinic for a proper evaluation but they wouldn’t take him because of his hospice status. “It’s not my fault” the resident yelled down the hall at me over her shoulder. “It is your fault” I shouted back. “Grow a spine” I thought, “you are murdering my brother”. My brother did not know he was on hospice and clearly wanted to live. He stated this multiple times and I also have this on video. No one discussed his wishes with him. My sister and mother refused to talk to me during the weekend, stonewalling me. “I don’t understand the medicine” my mother excused in the tone of a fifteen year old girl. My dad said “are you going to take care of him?” to me- making completely clear that he was killing my brother because he no longer wanted to take care of him. “Yes” I said “of course I’ll take care of him, just treat him”. This was to no avail. My family eventually would not let me into the hospital. The security guards were super nice to me, thanking me for going willingly out of the hospital, and like everyone else “were just doing their jobs”.
I called more than thirty law firms to try and get power of attorney that weekend. None were open on the weekend. My parents did not let my brother talk to his friends who wanted to get plane tickets or drive to see him. Finally Monday morning, as I lay in a hot hotel room in Salem Ohio, my dad’s wife texted or called me (I was in so much shock that can’t remember which) that my brother was dead. My parents and sister never called or texted. My sister, who is a journalist, tweeted out a “what a great sister in a tragedy spin article” and how grateful she was to be there when he died (secret daggers at me who they would not allow in the hospital) just moments later. She used the murder of my brother to try and twist the knife in me- something that completely blows my mind in its callousness. This was before I had a chance to tell any other family or friends. People that were close to my brother found out about his death from Twitter. They had no funeral. I lay in the sweaty hotel room with the broken air conditioner, unshowered, in a cocoon of deadness. My cell phone rang and it was a Salem lawyer finally getting back to me to ask questions about taking on my case. “He died” I said. The lawyer was still trying to get me to give details of the case “Oh yeah” he said “we sue Salem Regional Hospital all the time” in a voice connoting how bad the hospital is. I couldn’t talk or move, I just lie in a sweaty cocoon of bed sheets for hours and hours frozen.
When I finally drove to Pittsburgh the next day to stay with friends in my initial shock of grief, my friends said “your parents lost two children that weekend” without me even having to tell them that I had decided to cut off all ties with my immediate family. They knew. How could my family ever come back from killing my brother? Things were irreparably damaged. My dad sent me an email saying “someday I would understand” and “letting go of the past will let us move on” and “please don’t abandon your family”. Someday I would understand? That you killed my brother? He said this in the manner of “someday sweety, you will understand why we couldn’t let you go to that party”. I am forty years old, I am a professional, I have an MD and a PhD, and you murdered my brother in a horrible death trap of a hospital. No, I don’t think that I will ever understand. At least not in the way that you are saying. I might understand your malignant narcissism better, transgenerational trauma, how to fix the healthcare system so this doesn’t happen to others. These things I hope to someday understand better. I understand that I need to fill out paperwork to get my own power of attorney in place so that you never make medical decisions for me. I understand that it is unwise to ever get sick in a place without a major hospital in the US. I understand that I’m done with the gaslighting, and in order for me to heal, I need to stand in my truth. My heart is beyond broken for so so many reasons.
I love you Jose, and it’s not your fault either. I’m sorry that I couldn’t save your life and I would give anything in the world to change that. You will always, always, be in my heart.
Love, your big sister,