“It was the morning of October 11th, 1996, on Long Island, New York. My big brother, Glenden, woke up on his fourth birthday to a pretty interesting present, Me. A little sister! We are four years apart with the same birthday.
He liked to be called ‘Glen.’
Growing up, we played together, I looked up to Glen. I thought he was so cool, funny, and smart. Some of my earliest and best memories of Glenny and I included watching cartoons together early in the morning, building LEGO ‘robots’ and then battling them near the fire place the night of Christmas Eve, watching him catch crabs and fish on the beach during the summers (sometimes even with his bare hands), chasing him on the playground of our small private school and making our very own ‘comics,’ then hanging them on the wall behind his bunk bed. The one thing I can never forget about Glen is how much he cared for me. Whenever I wasn’t around, he’d always ask mom where I was. He’d always make sure I was OK.
My big brother was very intelligent and talented, showing an interest in science at a young age. I still remember all the silly experiments he’d be doing down in the basement with his science kit. He was musically gifted, he played clarinet and guitar. Glen was always outside in the woods behind our childhood home, exploring. He was in Boy Scouts. My mom knew Glen was smart, but also noticed he was hyperactive. She figured it was his age (being one of the younger ones in his class). He could stay back for one more year of preschool, since his birthday was close to the cutoff date anyway.
Later on, this would make Glen and I three grades apart in school, although we were four years apart in age. Starting in preschool, my mom would receive all types of phone calls from his teachers. Preschool called to let her know Glen was the most perceptive in class and most artistic. His artwork was chosen to be sent in for a preschool conference. In kindergarten, she received a call from the teacher that a student was trying to kill some bugs and Glen became upset because he wanted to save them. ‘It was such a kind gesture, he is very caring,’ his teacher said.
As a first grader, his teacher rang my mother, but this was a different type of phone call – ‘Glen is having trouble focusing, staying on task and paying attention. I feel you should have him evaluated.’ The psychiatrist, children’s center and regular pediatrician evaluated him. Then my mom, dad and Glen’s teacher filled out an evaluation form. This lead to an ADHD diagnosis and recommendations from the four different professionals to start Glen on a medication called Ritalin. The paperwork was sent to his school. After the paperwork, there was a meeting with the Special Education committee to develop his IEP (Individualized education program). My brother’s hearing test results showed that one of his ears was sensitive to noise. For example, if a child was tapping their pencil on a desk in the back of the room and the teacher was talking, he would hear both sounds equally as loud. The IEP was used so Glen could do his school tests in a separate room, without distractions. I know this was for a helpful purpose, but being the only child in a classroom who has to have ‘special circumstances’ seems a bit humiliating. His teacher called my mom shortly after to say, ‘Today must’ve been the day you started Glen on medication. He did excellent in class and wasn’t fidgety in his seat.’ I bet it was a relief to be receiving positive phone calls again.
In fourth grade, my parents noticed that Glen was twitching. He’d put his hand up by his face, blink his eyes and exhale from his nose frequently. The pediatrician said he needed to stop the ADHD medication immediately, and then sent him to a neurologist. The neurologist diagnosed Glen with mild Tourette’s syndrome. The medication stopped but his tics didn’t, and they worsened when he became anxious. He tried so hard to control the tics in public, making school so hard for him. Now, he was dealing with his ADHD without medication.
His fourth grade teacher, (who I also had when I got older) despised him. She had no patience for children. She rang my mom too. ‘Glen is being disruptive in class,’ she said. My mom let her know that he had to stop his medication, and she was trying to find a way to manage it. Later, at a parent teacher conference, she said to my mother, ‘You don’t actually think he’s gifted, do you?’ My mother replied, ‘I do actually, he’s very gifted in science.’ Being uneducated in ADHD, she quickly labeled my brother as ‘the bad kid.’ Soon, it was obvious the teacher didn’t want to deal with Glen’s IEP. They ‘forgot’ to give him his state test in a separate room. My mom complained, and suddenly the state tests scores ‘disappeared’ that year. The principal and the teacher teamed up together, creating a scheme so they could expel him for being ‘a bad kid.’ Really, they just didn’t want to deal with a learning impairment. They knew they only needed three reasons to get rid of him. Glen was never ‘written up’ for anything. Suddenly, he was being written up for every little thing.
For example, a group of boys went into the bathroom and dropped napkins on the floor. My brother was the only one who got in trouble. Then a girl was constantly chasing Glen on the playground. He had informed the teacher that it was bothering him, and nothing was done. He couldn’t get her to stop, so one day while she was chasing him, he turned around and threw sand at her. Lastly, another child pushed him on the playground so he pushed this classmate back. Glen got in trouble; the child who instigated it did not. Just like that, Glen was walking down the hallway of the school in tears, begging my mom, ‘please Mom, I don’t want to leave, I promise I’ll be good.’ The principal told my mom that Glen was expelled and that if my mom didn’t leave her office, she’d call the cops. After he left, one of his former classmates told her mom that the teacher had said to the class ‘it’s so much better here with Glen gone.’ Glen was devastated, he had to leave all his friends and he told my mom, ‘I don’t like myself very much.’
I was in first grade at the time. I didn’t really understand what was happening. I spent every day at home with Glen and never saw anything horribly wrong, so one could understand my confusion why he had to leave. The one thing I did know is that if my big brother was leaving, so was I. With three months left in the school year, we started public school. Glen was miserable for obvious reasons and 6-year-old me was absolutely miserable too. I couldn’t handle the change either. I vividly remember screaming and crying that I didn’t want to go to school anymore. My old school was small, I knew everyone and I was comfortable. It was only one class per grade. This new school was very big and scary to me. The kids were mean, they called me names. My parents now had two children who were emotionally distressed. I know this probably killed my mom, but despite how badly the 4th grade teacher and school principal treated Glen in the private school, she let me go back there. I was so happy to see all my old friends. I was finally comfortable again. I didn’t realize yet, but being in different schools started to drive us apart.
That was the start of some drastic changes in what Glen was used to. A year later my parents were divorced. Then we sold our childhood home. The only home we knew.
I still remember seeing such a large change in my brother (even though I was so young). He wasn’t a happy vibrant little boy anymore. People that didn’t know my family personally but only knew that Glen had been expelled automatically thought something must be horribly wrong with him. He must be ‘a bad kid.’ My best friend wasn’t allowed to play with me for months after her parents found out about him being expelled. I remember being approached by my classmate a few years later in the third grade – ‘I heard your brother got expelled, so and so told me.’ I felt my stomach sink, I felt ashamed. I saw ‘so and so’ years later, when I was 17 years old. He told me, ‘Your brother was so sketchy.’ I felt the same thing I felt in the third grade. This was secondhand shame, so I can’t even imagine what Glen felt like.
As Glen grew into his pre-teen and teenaged years, we grew further apart. Even though we were always under the same roof, it didn’t stop us from not interacting. He was constantly fighting with my mom, he hated school, he was rebellious. He hung around with the wrong crowd, because the ‘right crowd’ already didn’t understand him. He’d get angry so easily, he’d break things, he started cursing. At times I thought … maybe they are right, maybe he WAS ‘the bad kid’…but now I know it’s because he was broken inside. I was embarrassed when friends came over because of the fighting. I didn’t want anyone to know Glen was struggling. I wanted people to think of Glen the way I did. I wanted them to think he was cool, funny and smart, because he was. I remember him and my mom were in an argument and he was yelling. I was probably about 10 years old. I left a note at my brother’s bedroom door, ‘I get scared when you yell.’ He came downstairs, saw me crying and gave me a big hug along with an apology. Most importantly, I remember him saying, ‘I love you.’
Remember how I mentioned he loved the outdoors? Even though he didn’t like himself very much, he still spent time doing what he was good at. His love for science was tied into his interest in nature. He was good at sailing, fishing, camping and he loved hiking. One day, while hiking in the woods, Glen ended up with a tick bite – a bite that infected Glen with Lyme disease.
They started Glen on an oral antibiotic which didn’t help. Lyme disease made Glen chronically ill. Sometimes, he’d start to feel good and then fall ill and weak. He was losing sleep, he had horrible insomnia. He told us his brain was ‘cloudy’ and he couldn’t think straight. Glen asked if he could go on IV antibiotics since he was educated on intravenous antibiotic therapy for Lyme disease. Doctors took his Lyme disease lightly. He knew he needed to be on IV antibiotic because it was severe. The infectious disease doctor even said he ‘didn’t have time’ to answer all of the questions Glen had. Finally, after months, they agreed to the IV antibiotic idea. The nurse would come to insert the IV, who actually put it in his arm incorrectly. When my brother called to let them know, the nurse didn’t come back for days to fix her mistake. It was all too late anyway. Lyme had reached his central nervous system. He gave up on doctors.
Glen was so funny, smart and cool. But if you asked him how he felt, he’d tell you he was weak, achy, socially anxious (which made his Tourette’s worse) and that he was ‘the bad kid.’ Now in his 20’s, he avoided public completely. Only going out for doctor’s appointments, couldn’t function with how weak he was from the tick bite.
And if you were wondering, no, we never became close again. Under the same roof, we may have said one or two words to each other… once a month.
I felt like I had watched life treat Glen so unfairly. I wanted so badly for something to go right for him.
Fast forwarding to the night before February 3rd, 2018 – Glen was extremely angry and upset. My father came in a car and picked my mom and I up. Glen called my mom to see where we were, and I still remember what would be her last words to him. ‘We’re giving you space for the night, but we want to help you, Glen.’ The next morning, we were greeted by my dog at the front door. She was crying, panting and vomited (the first sign something was wrong). We found 25-year-old Glen laying face up in his bed, with a stiff body and blue lips. My parents desperately tried to revive him as I sat on the stairs outside his bedroom. I could hear the CPR being performed. I heard the screaming, crying, a 911 operator’s voice and soon sirens outside my house, but I was silent. I just looked at the floor. I was frozen. The house was crowded with police, EMTs, detectives, yet it was the emptiest it had ever felt.
‘He’s gone,’ said an EMT. ‘Please just try!,’ cried my mom. We sat at the bedside crying together. My mother cut a piece of Glen’s hair to save. My dog cried as Glen was carried out on a stretcher.
Up until his last year, he’d expressed that he wanted to move where no one knew him. He felt everyone thought he was a horrible person.
I know what you’re thinking. How’d Glen die? But the cause of a physical death is nothing once you learn what caused the death of someone’s soul. I lost my big brother way before his death, and it had a lot to do with society’s ignorance.
Many days I still look at the floor. But today as I write this, it’s the first time I have clearly remembered so many wonderful things about Glen. Before today, I mostly remembered the hard times leading up to his death, even though I may not have admitted it. It was so hard for even me not to look at him as ‘the bad kid’ at times. But I am appreciative for this opportunity to share his life with you.
Some things to take away from this story: ADHD is a learning impairment, NOT a behavioral problem. Lyme disease is a chronic illness. Writing is an amazing way to help with grief. And Glen, you are NOT ‘the bad kid.’
Love,
Your little sister,
Juliette
P.S. What is grief? If I could explain grief in a poem, here’s what I would say.
Have you ever met someone
Who’s always around
He may not be in sight
But he’s always in town
You can feel his presence creeping
Almost like it hurts
Sometimes you feel it when you’re sleeping
Kind of like a curse
If you push him away
He’ll come back even stronger
He will wait for the day
You can’t take it any longer
So you never fully deal with him
Because you’re scared of what you’ll do
He kind of just hangs out
Not in front, but still in your view
I think he is bipolar
Most times he is calm
But out of nowhere he’ll just hit me
When I did nothing wrong
He is always there to remind me
What I always try to forget
And then I cling to him so closely
Because he’s all that I have left
Sometimes he even makes me cry
He tells me it’s for relief
I wish he would leave me alone
This person’s name is Grief.”
This story was submitted to Love What Matters by Juliette Sullivan of Long Island, New York. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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