When I came home from the hospital, the story goes, Joseph held me in his arms so tenderly that my mom had a hard time pulling me away.
I was just a newborn and so I don't remember, but I have seen a photo of us like that, me tiny and him just a loving four-year-old big brother.
He was wild, even as a kid, making his sweetness to me even sweeter.
Everyone but me in the family called him Jose, for short, as my dad's name was already Joe. My grandma called him Joe-boy.
But he was always Joseph to me, my big brother, who made my world so complicated and deep.
Joseph suffered since he was born from a vague mood disorder that left him somewhere on the spectrum between manic depression and schizophrenia. It's a horrible disease that has taken more lives in my family than any other, like cancer for instance, which plagues my father and me and others.
Growing up behind him was a constant lesson that life is both hard and unfair. It was at times wondrous too.
Like my father, Joseph had this larger-than-life personality. Unlike my father, he didn't have the ability to make his way in the world, always grappling with his illness. As a result, he had this kind of magnetic energy, pulling and pushing everyone around him at once.
I was a tomboy and wanted to do everything just like him. In one of my earliest memories, I remember acting out with him, breaking some rule in our house, and then taking the heat myself (!) when he blamed me after we got caught.
Never sign up to be Joseph's sidekick, I told myself that night.
But I couldn't stay mad at him. His spirit was too adventurous, his sense of humor too dry and his green eyes too mischievous.
So we were friends.
The most athletic kid in our family, he ran the neighborhood, delighting and terrorizing the other children just as he did to me. We watched him string climbing equipment all over my suburban Pittsburgh house and then repel down its side while my parents were busy with work.
He effortlessly scaled our tallest trees just to antagonize the neighborhood bees.
They attacked him of course. Joseph came home crying with sting marks all over his face.
After that, my dad joked that all the bees around the world had faxed a picture of Joseph's face to each other, identifying him as their enemy. I don't even know how many times he's been stung by them, in how many different countries and states.
It was just the way he was, incorrigible, head-strong and curious.
When I got to high school, I was already infamous, "Joey G's little sister." I basked in his popularity.
An older girl offered to drive me to school, eager for information on how to penetrate his heart and mind. I didn't have a clue as to what to tell her.
"Joseph is different," I wanted to say. Instead I just avoided her.
Eventually, I learned to avoid him too.
Joseph was kicked out of high school for dealing marijuana in the bathroom. Before he went away to military school so that he could graduate, he locked himself in his upstairs bedroom, while he had a mental breakdown.
My mom scrubbed images of demons off his walls after he left. I prayed for him but knew he would be back. He was expelled from military school a little while later for dealing drugs there too.
It was the beginning of the end and he was just a teenager.
My parents fought over how to handle him. My dad was in denial about his behavior and my mom struggled in their marriage in the face of it.
I moved out of my parents' house the summer before my junior year of high school and in with my older sister who was starting medical school at the local university.
After Joseph got into a debilitating car accident that fall, my parents divorced. He was paralyzed from the chest down.
They cared for him as best they could for as long as they could. His physical and mental health problems compounded. One of his friends became a full-time caretaker as he bounced around from apartment to apartment, unable to keep up with his requirements for daily living.
We struggled to find placement for him in a state hospital. There simply aren't adequate laws or health services for people who face so many medical issues like him. We couldn't commit him to a facility where we knew he would be safe until he became so dangerous to himself or others that there was no alternative.
That day came.
I was in my first semester of Columbia University's graduate journalism program when I heard he had been committed to a mental hospital for threatening to kill my father.
In classic Joseph fashion, because he was disabled, he wanted my dad to procure the weapon for him and then bring it to him. He couldn't see the humor, but had he been more with it, he would have laughed.
Pennsylvania state law recognized his desire as psychosis. We committed him to a hospital and then drove out to his last apartment to clean up the mess.
It was horrifying.
He had been booted from so many apartments that we had a reputation among the landlords who started to refuse to rent to us.
I could see why.
There were full catheter bags he needed to go to the bathroom all over the place. A chair had fire extinguishment across it. I saw the stove where he burned his own face, telling us later he had been preparing to train for war under a sun god, the main voice he heard.
After that visit, when the New York City subway dropped me at my stop in Bushwick, Brooklyn where I lived, I repeatedly vomited into the sewer outside the station.
I went in for a psychiatric evaluation at Columbia and received a post-traumatic stress disorder diagnosis. I was relieved. I had been developing intimacy issues and feared I had his same disease.
And I felt guilty, too, for escaping mental illness.
I graduated from Columbia and moved to Florida to pursue my career in journalism. I covered politics for the Naples Daily News but picked up health care reporting after the 2016 election when I went to Tallahassee to write about the next legislative session.
Joseph was never far from my mind as I wrapped it around state policies that affect people like him. I saw how little the government invests in preventative and community health services. I saw how it leaves people to flounder until they are so sick they are forced to become its ward.
I saw how the system pushes the hopelessness of disease onto the patient and their family. I grew angry at the health care system, at the corrupted politicians and hospital executives who created it. I swore to myself that I would change it by exposing it for the sham that it is.
But it changed me too.
I began to see how impossible it is to survive in the health care system as anyone but me — an educated, self-determined patient, who doesn't internalize the bullshit it places on us.
I thought of my brother and how he was never that patient, never even that child.
My dad called me on Wednesday.
He was almost incoherent, saying something about becoming unmoored. He mentioned that Joseph was back in the hospital, nothing new. Joseph had been rotating through nursing homes and hospitals for years now, recovering just enough from his physical ailments to get asked to leave for poor behavior.
He had exhausted all the nursing homes in Pennsylvania — once getting removed because he tried to smoke a cigarette in a room full of oxygen tanks.
So now he was in a hospital in Ohio.
But something seemed different this time. My dad was too upset. My mom, my husband and I booked flights to visit.
On Thursday afternoon, I visited him for the first time in his room. He was moaning and hooked up to a dialysis machine. The nurse began to explain how it worked.
My vision blurred.
I told Joseph that I loved him, and then quietly bowed out of the room to find a piece of wall to hold onto so that I wouldn't throw up or pass out, such as is now my physical reaction to hospitals and injury.
The next morning his three physicians sat down with us in a meeting room. Joseph has had bed sores for years that were now septic. He wasn't responding to antibiotics.
To survive, Joseph would need intensive surgery, for which he wasn't ready. During that surgery, he would get a feeding tube inserted and outside bags connected to his kidneys and intestines for function.
If he survived, his physicians said, he would be bedridden for a year while his wounds healed, if ever. He would have to live the rest of his life with the tube, the bags.
They didn't think he could handle it, physically or emotionally. I agreed.
"It's almost like what are we doing here?" I asked my parents.
Then I broke down and cried while my parents decided to forgo the surgery and transition him to hospice care. Joseph was moved out of the intensive care unit so that he could be made more comfortable. His temporary bags and tubes were removed.
He had a few final moments where he could talk after being moved to hospice. I cried into his arms on Saturday afternoon and told him I loved him again.
"You are my big brother," I said to Joseph. Unencumbered, he held me.
"I love you, Boo," he said, calling me by my childhood nickname.
His kidneys shut down and then his liver. He began to drift into sleep.
On Monday morning, my mom held his hand as he took his final breath. We will scatter his ashes together at the beach, where we know he wanted to live out his final days, but was unable.
Rest in peace, brother. You deserve it.
Thank you for the beautiful article! I met Joe at Addison and I will never forget him. God bless you Joe. Fly high in heaven!
I metnjoey at addaison health care centee. Man he was a live one. Yes joey had some deamons but he also had a heart of gold. I remember i remember me joey and a guy named eric wold eat out everyfriday. Just the three of us. I will forever miss you brother. With out yiu and eric i dont think i could have made it.
Thank you for sharing and condolences to you and your family
I met Joe during my stay at Pebblecreek
I got to share conversations with Joe … shared cigs outside and I let him use my phone to listen to music. He really liked that
He seemed to have a direct line to God … He spoke to Him often
Knowing that Joe is better place, makes me happy for him !!!!
🙏🙏🙏 and hugs to you and your family 💞
Thank you so much for writing this beautiful story of his life. We became great friends while he was a resident with us and I will miss him dearly. My thoughts and prayers are with you and your family.
Alex, we are forever changed when we love someone whose physical and mental health brings such suffering. The only grace is that it can instill in us greater compassion. God bless you and your family in this time of sorrow.
Boo – this is such a touching tribute to Joseph. I remember fondly hanging out with him here in AZ and going to a cat show with him. Jeff and I send our love to you and your family, our most sincere condolences.
My Joe boy is breaking my heart. He was extremely courageous and brave at the end. Nobody should be dealt the challenges he was at such a young age. Love you forever, Mom
Beautifully written, Alex. I know that he must be at peace now.
Dear Boo, I remember the little blonde girl with the dog running around Walnut Woods and playing with Samantha and Paloma. So sad about Joey as Kara called him when she told me he passed away Your story was eloquent, heart felt and a beautiful tribute to your brother. He had a lot of demons but he was still your big brother and we are so so sad for your loss. Thoughts and prayers to you and your family. Sue Steiner
Alex – I’m so sorry for your and your family’s loss. Sounds like your brother lived an adventurous but challenging life. I hope he’s at peace now and I hope you and your family find the same in the coming months and years.
This is extremely sad, but you are very brave to share. The healthcare system, in particular regarding mental health, is totally broken and was never properly, or fairly, established to start with.
So very sorry for your loss.