14 years ago today, my brother Matt was turning 14. The birthday festivities we had planned for him were postponed. He was glued to my parents’ couch for several days by then. I remember the hacking cough. The pediatrician had said it was a bad case of the flu. He even said that after the hacking cough was producing blood.
A little over 5 years separated us. I remember before he was born, I was wishing, hoping, and praying for a little brother. I guess I put the pressure on my parents. My sister, Sara, and I stayed at our Grandma Phil’s house when my mother went into labor with Matt. At some point, we got the call that we had a little brother. I said, “I think I’m going to cry,” and sure enough. It was my first memory of having tears of joy. He was our little MTV (Matthew Thomas Varagona). I’m sure my sister and I had some kind of a say in those initials.
We weren’t the greatest brothers to each other, but the love was there. There were periods of time when we would cuss at each other and chase each other with eating utensils around the house. I’m sure it was under the acceptable level of what brothers can do to each other. Matt had a reputation of being a shit disturber, and I’m sure some of that came from having to deal with me. Much of it though is up to interpretation. He had a great sense of humor, but much of it came from challenging authority. It was our way. There was a brutal honesty in that attitude. We came to understand each other, I think. He may not have understood why my afro was bleach blonde in 1997 and told me multiple times to dye it back. And I may not have understood his musical tastes, such as his liking of Kid Rock, but we did our own thing and had some respect for each other.
I gave Matt a bell for those days on the couch. He would ring it, and I would scream from the basement, “I’M COMING!” as I ran upstairs. I’d assist him by getting a drink or a bite to eat. I had decided not to go back to school after my first semester of college, so I had the time to help. Around his birthday, the crap that this boy was spitting up was awful. There had to be a couple of inches in the bottom of his couch-side trashcan. He wasn’t acting like it was anything worse than the flu, but something was obviously wrong. I expressed to my mother that we needed to take him somewhere and on the 7th or the 8th, we did. When she told me that I needed to help her get him to the hospital, I began to realize even more how things were. Matt was too weak to change his underwear and pants so I assisted him. We took him to the ER at St. Louis Childrens’ Hospital.
That first day, they had him in isolation. I called my job at the library and told them I wouldn’t be in until I knew more about my brother’s situation. I went back to work a month later. We traded turns feeding Matt ice chips. He was still talkative but in discomfort. Things seemed pretty serious, but no one knew what the hell was going on. The suspense had me smoking heavily. My family didn’t like that, but the Parliament Lights and their recessed filters helped.
He was admitted to the pediatric ICU. They had him hooked up to multiple monitors and IVs. It would be some time before the medical professionals had a decent idea of what was going on though. Matt and I had a moment together that night. A priest had just visited him to do the anointing of the sick. I had remarked how that was strange since they typically reserve that for dire situations. I don’t think either of us knew the severity of his case that night. I don’t remember the conversation but we talked a while and it was light. These are the moments you wish you had perfect recollection of, but those details fade.
I believe I spent the night at home. When I returned, my mother informed me that Matt was put in a medically induced coma to get a better handle on what was going on. I regretted not spending more time with him the night before. Hell, I regretted not being there when they told him they were going to that and when they did. The machines in his room increased in number. There was a canister filling with the blood and miscellaneous fluids from his lungs. It’s a horrible feeling knowing that the people trained to handle the medical case at hand don’t know all. They can only go through the motions, maybe keeping up with whatever is wreaking havoc, but without knowing, it’s just a guessing game. And they told us that in so many words.
Three days into Matt’s stay at the hospital, a doctor took my family into a private room. It was a dimly lit room with plenty of tissue, so it wasn’t the room for good news. The doctor said at this current rate, we needed to prepare for Matthew to die. His kidneys were failing. His lungs were failing. Whatever was in him was tearing through his lungs like razor blades. Of course we all started bawling, and through that, had to repeat it all to my Granddad who was in the room and was very hard of hearing.
Matt’s friends and their families came to visit daily. They brought birthday and ‘get well’ balloons. I would go with them down to the hospital chapel at times to talk about Matt and about life. While in the ICU, his high school acceptance letter arrived from Bishop DuBourg. We talked to him, not knowing if he could hear us. I would talk to him about getting Crazy Taxi for the Dreamcast for us to play and splurging on a steering wheel for it, but he had to get out of that bed first. We had to rub his feet and exercise his legs to prevent bed sores. As the days went by, I was sleeping some nights at the hospital. My sister did as well. My parents never left. I had to tend to our dogs at home. We always hoped for different and better news in the morning. How could this have progressed so quickly? How did it just appear to be the flu to doctors?
On the 13th, there was a birthday party for a friend of mine. My family pushed me to get out. Matthew’s condition wouldn’t change during that time, they said. I had friends sign a ‘Get well’ card for him while at the party. Some hadn’t even met him, but every little bit helps, right? My friend had said he was surprised I went to his party. He didn’t have high hopes for the situation. He had seen the death of his mother several years prior. It was a very odd feeling to be in the midst of all of this and to be considering a future unlike anything I knew before.
We were told what to expect if he made it out of the state he was in. Failing kidneys can get dialysis, failing lungs were trickier. They were considering a few possibilities on diagnosis, including Good Pasture’s Disease, but at some point the doctors settled on Wegener’s Granulomatosis (now known as Granulomatosis with polyangiitis), an auto-immune disease that usually hit folks in their 40s or 50s. The treatment would’ve involved long-term immunosuppression. People could live with the condition though if caught early enough. It did not look good for Matt though.
The doctors informed us he would be put on ECMO, or extracorporeal membrane oxygenation, which from what I remember, helped oxygenate his blood since his lungs were being ravaged. The hope was that it would allow his body to rest and at some point it would be a bridge to further treatment. If the patient is weaned off and the body doesn’t take charge, it obviously is fatal. It was another machine in the mix, adding to the beeping, pumping, and digital readouts around our Matthew.
I had many late nights at the hospital during this time, drinking coffee in their cafeteria and going outside for a few cigs. On the hour in the cafeteria, they played a song. Sometimes the theme to Star Wars, sometimes it was “Yellow Submarine” by The Beatles. I still think of those times when I hear the melody to “Yellow Submarine.”
One day, I was told that they would be taking him out of the coma, only for a few moments, I’m assuming to make sure he was still responsive. I went in there and watched him open his eyes. There was too much crap on him helping him breathe and just live that he couldn’t speak. It has to be so terrifying to wake up basically in a shell of a body, that you can’t move or speak and you have no idea what is going on. I talked to Matt, being as gentle about an explanation as possible. I only hope he was well drugged up at that point enough to not feel all of the tubes, needles, and nonsense connected to him.
I remember waking up on the 20th at the hospital and my sister had told me my dad didn’t think Matt was alive anymore. His body had become purple and swollen. It was a difficult sight. A holy roller co-worker of my father’s came to pray over my brother with a chaplain friend. The family allowed them to do so outside the door to the ICU. They were waving their arms and speaking in tongues. It was a bit much for me. During one of the saddest times of my life, it brought out a snicker. I’m confident Matt would’ve done the same.
The doctors assured us he was still alive, but prepared us for taking him off of ECMO the next day. We remained hopeful but by that time, had prepared somewhat for the end. The 21st was a Monday. The swelling and color had subsided a bit. Visitors for Matthew were arriving that afternoon, not knowing what they were getting into. My mother, father, and sister went to his bedside after they took him off of the ECMO machine. We were telling him to be strong and he could do it. With time, I was breaking down and yelling at him, calling him an asshole, and telling him he couldn’t die on us. I ran out bawling and into a crowd waiting for news. Co-workers, friends, and family were all waiting. The holy roller organized a prayer circle. I am no religious man, nor was I much of one at that time. It was beautiful to see people gather for my brother and wish him the best outcome. Once the speaking in tongues started up though, I grinned through tears.
It’s so surreal to go somewhere with somebody and have to leave forever without them. The grief was unbearable at times. The night he died, I stayed overnight with about 10 of his friends. We stayed up most of the night telling stories about the person that we all knew, many new to me, which painted a bigger picture of the brother I just lost.
Funerals are sad. Funerals for young people are horrible. When that person is someone so close, it is unimaginable. I tried my best to get “Soul Bossa Nova,” the theme to Austin Powers by Quincy Jones played at Matt’s funeral. Alas, I was voted down. I suppose it wasn’t possible in a Catholic church. We did sing “Morning Has Broken” by Cat Stevens, which warmed my heart. On the way to the cemetery, I looked out the back window of the limo transporting my family. I saw a line of cars that went back beyond my line of sight. I remarked that I had never seen anything like it. My dad said, “And hope you never see anything like it again.” We ended Matt’s burial ceremony by blasting Kid Rock’s “Only God Knows Why” on a boombox that my sister gave my brother for Christmas. We blasted it in a national cemetery. There was something very hoosier, very sticking it to the man, very perfect, and very Matt about it.
It’s been 14 years since Matt turned 14. It feels so strange to realize he’s been gone for as long as he was here. We keep his memory alive as much as possible through benefits, fundraising drives, and just telling stories. My 5 year old son has heard so much about his uncle that he never met, that he talks about him as if they’ve spent so much time together. While that dark February sticks with me, sometimes so vividly, it is a constant reminder to not take the small things in life so seriously. It is a reminder to enjoy every moment you have just living and to enjoy everyone around you, because we don’t know how and when it will end for any of us. I’m sure Matt would approve of that.
Thanks for reading.
Matt, myself, and Sara at my high school graduation in May of 1999
Jim Varagona 