Jim Varagona

Make Today a #DayOfHealing

Today I turn 34. This post originally was going to be me saying:

“Look I know many of you were wondering what to get for me or wanted to buy me a drink, but in lieu of that, please make a small donation to children’s cancer research through my St. Baldrick’s campaign here: https://www.stbaldricks.org/participants/jvaragona. I aim to raise $8k by March, so get me a nice head start.”

While, that still applies, my emotions run high today for my city. Images of a grieving family and community and separately, destruction of businesses and general mayhem are difficult to swallow. At the same time, I am moved by demonstrations across the country in the name of Michael Brown, aimed at drawing attention to a system that still needs much work. Let’s not get into an argument about this. I’ve seen enough on social media to see the varying opinions. It is dizzying and frustrating to see folks at both extremes not having any understanding for the other side.

My friend, Danni Eichenhorst, has proposed a #DayOfHealing for today (please see her post on ways to help move forward here: http://artofwellfare.com/2014/11/25/dayofhealing-ways-to-help-move-forward/). Yes, some are still grieving and going through intense emotions over this. It is never too early to begin healing though. No one is acting like any of this will turn around overnight. We can all be a part of making a change though.

I challenge everyone to do something, of whatever magnitude, to begin that process today. Post it on social media, not to brag, but to challenge others. Use the #DayOfHealing hashtag on Twitter, Facebook, and Instagram.

As we go into Thanksgiving, I also challenge you this: go outside of your comfort zone.

  • Watch and read news sources other than your standbys.
  • Have a conversation with someone you know you will disagree with, but really listen to each other and ask many questions like: Why do you feel this way? What life experiences have led to this thinking (and consider that for others as well)?
  • That homeless person you see at that same spot, everyday — bring them some food and talk to them like a human being.
  • Instead of avoiding a neighborhood that you think may be violent because of images you saw at night on your TV, like Ferguson or South Grand in the City of St. Louis, make a point to drive through it rather than avoid it entirely. Patronize a small business or ten. People own those businesses and depend on your business and word of mouth to survive.

Why are we so apt to paint with a broad brush? Instead of blaming entire races or groups, make an attempt to narrow down those thoughts.

It’s a widely used quote, but “Be kind, for everyone you meet is fighting a hard battle.” Kindness and understanding can lead to greater things. Instead of criticizing, consider what leads someone to a behavior. I mean really consider it. Are you that much of a superior individual?

At Thanksgiving with your family and/or friends, challenge them. In my family, it never fails that there is some drama going into a holiday. 99% of the time, it is petty BS. We should enjoy those around us and be thankful of those moments. Challenging those around us to think differently may cause drama, but hopefully perspective is gained by someone.

Some may wonder why I’m not pushing for reforms to the system being protested against. While I do find it incredibly necessary, I realize that not all will agree with that. We should however be able to find common ground and healing through a greater focus on being mindful of others. Start there. And if your response is “so and so isn’t mindful of others,” start by reading this again.

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Throwback Thursday: Hey Jimmy

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Josh and I celebrating “5 is 1 Tony Day”

Back in 1999, my friend Josh wanted to get my mad rapping skills on tape.

We chose Ol’ Dirty Bastard’s “Got Your Money” probably for its deep social meaning. This was in the day of having to listen to the lyrics and transcribe what we heard. We had no immense lyric database to search. After this masterpiece, an attempt was made to record a cover of “What the World Needs Now Is Love,” the Burt Bacharach classic made popular by Jackie DeShannon, but it didn’t quite match the magic of what you will listen to below. This was performed in my basement to several crowds. I’m sure they thoroughly enjoyed the experience and will cherish it forever as you will.

Ferguson and the Festering Wounds of Structural Inequality: A Quest for Awareness and Understanding

Wonderfully thoughtful piece by former classmate of mine, Dr. Adam Butz, on what has led to where we are now in Ferguson.

Adam M. Butz, Ph.D.

On Saturday, August 9, unarmed African American teenager, Mike Brown, was fatally shot by a police officer in Ferguson, MO, a suburb of North St. Louis.   The details regarding the initial altercation remain fuzzy but the tragedy appears to have been set in motion by overly aggressive policing (“get the fu*k on the sidewalk”).  The grotesque nature of the execution included multiple deadly shots in the back as the suspect fled the scene… Unarmed… Brown’s untimely death has sparked outrage and non-violent protests among bewildered residents looking for answers, accountability and justice.

Unfortunately, some episodic looting among opportunistic neer-do-wells has also broken out (seemingly unrelated to the legitimate protests).  Nothing excuses the unlawful looting in Ferguson but the underlying grievance of Mike Brown’s family and frustrations of the local community are justified.  Many whites – and sadly many of my own family and friends – will focus myopically on riot…

View original post 1,622 more words

My Soda with Susan

Last night I met with a woman at McDonald’s. I bought her a large Diet Dr. Pepper. I had a large Diet Coke. We talked about her troubled childhood and how many years later it led straight to her performing dance routines at live music events around the area. We talked about her being a misunderstood loner that has had many urban legends created surrounding her, some based loosely in fact, that are used in attempts to drive her from a community that she has lived in since birth. This woman is Susan Stone, known as the Dance of Life dancer.

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Susan has most recently been in the spotlight for being kicked out of the African Arts Festival at Forest Park in St. Louis, MO. On local CBS affiliate, KMOV, she claimed that she was kicked out because she was white.  While the details of that incident are complicated, it certainly made people across the world aware of this unique individual in my area.

Shortly before the African Arts Festival, I had exchanged messages with Susan, saying I was interested in shooting a documentary about her, having her address the stories around her as well as talking to those that are critical of her. Since 2009, she has uploaded over 2000 videos to YouTube of her dancing at various events and giving small glimpses into who she is and the message she wants to share. It seems unusual, but innocent enough. Of course people stare when she performs in public because of how she looks and the dance she does. And internet commenters have a field day with her, exchanging stories that they have heard and speculating about her age, her sex, who she is having sexual relations with, and what crimes she has committed recently. Her rap sheet is long, including traffic offenses, theft, and what many know her for — slashing tires.

I first came across Susan at the Whitaker Music Festival at the Missouri Botanical Gardens. She caught my eye, dancing off to the side of the stage where the band was performing. She gyrates to the music in a pink tutu, waving various props such as fans and ribbons. As I posted some photos to Twitter and Instagram, I began getting comments identifying her as a local celebrity of sorts that I hadn’t heard of before. When I went home, I did some internet research, coming across a plethora of material. This is too fascinating to not put together into one piece.

Some may say Susan will participate for the attention. Obviously she enjoys that a bit, otherwise she wouldn’t have the 2000+ YouTube videos. I think she does want to address controversies surrounding her, though. I have explained that I will be getting other sides to stories and other perspectives on her, and she has agreed to participate. Documenting such a story and her dancing will require shooting over the next year which I think will be quite the ride. I will launch an Indie-Go-Go campaign in the coming weeks to try to secure some funding for some higher quality equipment to work with and plan on continual updates on the progress of this project through a Twitter feed and Facebook page.

I welcome feedback of all kinds. Maybe you can give me leads on Susan’s past. Maybe you have reasonable questions you’d like asked. Feel free to participate. I only ask that dialogue be civil. Below I have included some of Susan’s videos. Enjoy. And thanks.

Final Update On My 2014 St. Baldrick’s Effort

On March 8, 2014, I had my head and face shaved in solidarity with children with cancer. In the 2 months leading up to it, through today, I raised $3340 for childhood cancer research through the St. Baldrick’s Foundation. No, St. Baldrick is not a real saint. The name comes from the event that started the organization being near St. Patrick’s Day and going bald. From their site:

The St. Baldrick’s Foundation is proud to fund lifesaving research throughout the world, awarding grants that focus on all major types of childhood cancers.

St. Baldrick’s donors and volunteers have enabled the foundation to fund over $127 million in grants, allowing the foundation to fund more in childhood cancer research grants than any organization except the U.S. government. Every grant goes through a rigorous scientific review process, ensuring every dollar has the greatest possible impact for children with cancer.

The event I took part in on March 8th at Helen Fitzgerald’s in St. Louis, MO had the most participants (679) and raised the most money ($529,000+) out of all of the organization’s nationwide events thus far in 2014. It is a very moving experience watching a stage full of people get shaven publicly for such a deserving cause, and sometimes even raise more funds on stage by putting a price on facial hair. The stories of children that inspired these people to participate included people shaving in memory of a child that passed away to children currently being treated actually shaving members of their family. You see/hear these stories and know that whatever we can do to better the lives of these children with cancer is a very good thing.

Stage of shavees

Stage of shavees

More shavees. 2nd from left was a young girl that raised more than any other female participant.

More shavees. 2nd from left was a young girl that raised more than any other female participant.

What I did was very little. As I raised funds, it helped me realize some things. In this age of social media, I was expecting donations to come in based on me simply posting a link. That didn’t work very well. Once I began personally engaging with folks on social media, through @’s on Twitter or personal messages on Facebook, I very rarely got a ‘no,’ and when I did, there was good reason given. Otherwise, for the most part, I was either ignored or received a pretty quick reply and a contribution. I wonder how much of it has to do with the personal contact or speaks more to how much people actually pay attention to our posts. Surely, some of it is pressure put on in the moment. I would say it is better to get a polite ‘no,’ or even be ignored, than get some kind of pledge that people do not come through on. That is quite a let down.

The fund raising was great for obvious reasons, but it also gave me the opportunity to catch up with many people I am friends with on Facebook but haven’t actually communicated with in some time. How many people are we friends with on Facebook that we haven’t actually communicated with in years?! In the process of picking up donations, I even was given a shot of tequila and a glass of wine. Charity pays!

People love goals. I raised my goal at least 5 times. When I passed a goal, people who hadn’t donated would congratulate me and assume their donation wasn’t needed. No, I did not magically cure cancer by hitting a small mark. You could donate daily and they’d still need more money before a cure is found. The goal isn’t to hit a mark. It is to find a cure, or at least to improve the quality of life for kids with cancer through breakthroughs in treatment.

With the help of 140 people that contributed to my effort, which I greatly appreciate, we got a smidge closer to that goal. It’s important that we realize outside of our bubble, people need our help. It’s good to recognize that and do whatever we can.

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For more information on St. Baldrick’s: 

http://www.stbaldricks.org/

To donate to my campaign: 

http://www.stbaldricks.org/participants/jvaragona

Redirect – Dealing with Loss

14 years ago, my brother, Matt, died. I know. It sounds like that other post, but it was on this very day, 14 years ago. It may have been an average day outside, unlike what we’ve seen this year, but it was anything but that for the friends and family of my brother.

Matt, in his later years with his prized Haro bike

Matt, in his later years with his prized Haro bike

Typically a February brings this all back and I’ll have flashes of it through the month. Writing the other post helped quite a bit by purging much of what flashes in my head from that time. I think it’s not very understood what happens after such an event, especially for folks that have never experienced a death of someone so close. I know I can make conversation awkward for people when they ask about siblings and I clarify by saying “two siblings, one deceased.” That’s fine. I get it. I’ve gone through the stages of grief and believe I have made peace with that horrible time.

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Brothers at the top of the Sears Tower

Guilt is useless but happens on occasion. Early on, I wondered if we could’ve done more. We trusted opinions of doctors we had seen for quite some time. On a side note, the same pediatrician office blew off my sudden weight loss and frequent urination saying I was a growing boy. It turned out to be Type 1 Diabetes which we only discovered after pushing further beyond the initial analysis. Even when we got Matt to the hospital though, it took them over a week in their care to get a solid idea of what was going on. It was too late for him once he arrived there. You can place blame but it does no good.

I was angry at doctors. I was angry at Matt, thinking he had any bit of control over his situation. I wished he would’ve complained more when he had the ability to, but the thing was just like the rest of us, his condition seemed bad, but nothing that could’ve ended the way it did. I was angry at any remaining notions I had of a god. I remember watching my mother struggle with it initially, but my parents’ faith seems to be pretty strong now. I don’t discuss my belief system much, not wanting to push others or listen to a spiel for me.

The depression was horrible. Many would say “I can’t imagine.” One girl I went to high school with actually said, “If that happened to me, I would kill myself.” I actually calmed her friends down and said that is an honest reaction. I’m sure a lot of people felt that way. I thought of Matt a lot. I would think that one day I would run upstairs to his room and he’d magically be there. Maybe it was a magnificent ruse. Maybe it was all my bad dream.

The dreams were interesting, incidentally. Every night was a different spin on what had happened. Most often, Matt came home from the hospital but was very sick. He had enough time and good days though to have gatherings and say goodbyes. Other times would be a normal dream, like the ones where you show up at your grade school in a towel, but it’s your high school and people you work with are there, and he just drops into it like it’s nothing. I actually welcomed the dreams.

Anxiety brought on an ulcer. My father had a bout of anxiety to the extent that we thought it was a heart attack. This was a week after Matt died. My parents said I had to get him to the hospital. We got into their Grand marquis and made the 15 minute drive. My dad was laying in the back seat, moaning, and telling me to flag down a police car. I flashed my brights at a cop car. The officer seemed puzzled and asked what was going on. I explained and asked if he could escort us, at my parents’ insistence. He replied that he didn’t do that kind of thing, so we went on our way. I hopped on the highway and sped to the exit for the hospital. The cop actually followed me and didn’t pull us over. We were in the Emergency Room at Barnes Hospital for a while as doctors checked him out. I paced around the waiting room most of the time. I called a friend from a pay phone to let her know that I probably wouldn’t make it out to bowl with them s planned that night. It was an odd feeling to explain what was going on after what had already occurred in the previous few weeks.

As I sat and waited for news in the waiting room, I had some tears in my eyes. A man probably 10, maybe 20 years older than me, that looked pretty tough, glanced over at me and said “Hey man, let me show you something outside.” It was a vulnerable moment. What else did I have to lose at that point? I walked outside the ER and he had a brand new, black Monte Carlo parked outside. He was really proud of it. Honestly, the car didn’t do much for me. We talked for a bit about why I was there and his mother that was there. It was nice that someone seemingly so different from me would attempt to cheer me up or at least distract me. Sometimes sharing experiences is all we need to do that. Or just listening to someone share theirs even.

Dad didn’t have a heart attack. It was anxiety. I managed to meet up with my friends at the bowling alley. A guy that didn’t come around as much, a friend of a friend if you will, was there. Last I saw him was back at the birthday party on February 13th when Matt was in the hospital. His first words to me were “So how’s your brother?” Oh boy. I said “He died!” and stormed off to chain smoke my Parliaments. I believe it was that same night that “Only God Knows Why” by Kid Rock came on the jukebox there, which we played at Matt’s burial. Something was trying to condition me for that grief thing.

My parents and I attended a few sessions of group grief counseling. One time was helpful, I suppose. It’s good to see other people struggling like you are. I had just finished reading “Fight Club” though and was a big fan of the movie. Support groups are used to comedic effect as the narrator attends them to be something that he isn’t. There’s the stereotypical going around the circle, introducing yourself and why you’re there, and then everyone says hello. Being a real part of that was a little humorous to me after the first session. Luckily there were no group hugs. I did hear fascinating stories of how others’ loved ones died from a brown recluse spider bite to being decapitated after driving under a tractor trailer. Several people talked of seeing apparitions of their loved ones. I just couldn’t get into that. Obviously, everyone deals with grief differently.

What helped me get through it all was the dreams. I felt crazy at the time since most nights I was interacting with my dead sibling in different versions of his future. It was better than being around people that didn’t necessarily understand. It was a dark place. I grew apart from friends. Mental and emotional states change so much. No one is really prepared for it. At some point though, I woke up from hanging with my brother and knew that I had to redirect the emotions.

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My mother and I in deep discussion at the benefit

My family became good friends with the parents of some of Matt’s friends. I conveyed to a mother of one of his friends that we needed to have a benefit. I provided the idea, but everyone else ran with it. It was a beautiful thing to watch everyone direct so much energy into something positive to remember Matthew. Instrumental were my mother and sister as well as Teresa Harvey and Denise Miller. Everything was donated for raffles and silent auction. Food and drink for an open bar was all donated. We had a speaker from the Wegener’s Granulomatosis Support Group (now the Vasculitis Foundation), Judy Brown, give a slide show presentation of the condition that killed Matt. It was important that we create awareness on top of bringing people together to remember our loved one and raise funds for researching Wegener’s Granulomatosis. We did a smashing job, raising $19,000 that one night, March 31, 2001, a little over a year after Matt had passed away.

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Grooving with Explosion On Impact

That night I emceed the affair, some of the time with my torso wrapped in Saran Wrap. Hey, it looked so cool. I sang with a band made up of brothers Dan Roth, on keyboards and guitar, and Dave Roth, on drums, who were friends of Matt’s, and Sarah Baggett, a friend of mine, on bass. We called ourselves “Explosion On Impact,” which Matt had said would be a great band name. It was our only performance. We stormed through a set of covers of Presidents of the United States of America, The Doors, “What Would Brian Boitano Do?” by DVDA (as I swam through a crowd of old folks barking into a wirless mic), and a polka medley a la Weird Al Yankovic of Limp Bizkit and Cypress Hill songs. At some point I said if anyone had scissors and the crowd could gather up some cash, people could get in line and cut my afro off. It was the longest my hair had ever been. A member of the band that played before us, Red Afternoon, said he actually had clippers in his van. Perfect. As we played through Chuck Berry’s “My Ding-a-Ling,” a favorite of my brother’s, the inebriated folks came up front, cash in hand, and took swipes at my hair with the clippers. We made $300 from that, despite some old man at the union hall we held this at telling us to get off the stage and pack up.

Explosion On Impact performing “Kick Out the Jams” by Presidents of the United States of America. Video by Ted Stahl.

 Explosion On Impact performing “The Crystal Ship” and “Light My Fire” by The Doors. Video by Ted Stahl.

There was an amazing after party at a house following this event. On top of that open bar, we took what was left over to finish it off. There had to be around 50 people that were there spread out over 2 floors, easily. There were a lot of hugs and saying “We did it!” I can’t say I know exactly how Matt’s death affected each of those people in that year prior, but that night was a great release of so much energy and emotion.

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After party

The following morning, my mother and I drove the proceeds to Kansas City, 4 hours away. I was hung over and my blood sugar was high and out of control. She pulled over for me to puke twice. We seemed to make it to KC in pretty good time nonetheless. We met up with the director of the organization we raised the funds for. I imagine I looked like death, considering I was freshly bald, pale as a ghost from the nausea, and exhausted from the night before. The director was a nice, older woman that thought it would be good for me to eat something and she wanted to show her appreciation, so she took us out for a steak dinner.

It seems fitting that shortly after this, just a couple of months, I met the woman who would someday be my wife. You don’t completely move on from episodes like that, but we must go on living without being miserable. We must remember the person we lost and make something good out of whatever bad there is. There were golf tournaments that my parents hosted in memory of Matt. In total, with those events and smaller internet fundraisers, our family has raised close to $30,000 in Matt’s name for the Vasculitis Foundation, which created The Matthew Thomas Varagona Memorial Grant, which was applied to a study that investigated the susceptibility of genes to lead to Wegener’s in family members of patients. There’s a scholarship in his honor that is awarded at the St. Joan of Arc Golf Tournament every year to an 8th grader entering high school, as he was that year he passed.

I talk to my 5 year old son about his Uncle quite a bit. He’s playing many of the same games and with the same toys Matt and I played with. Teenage Mutant Ninja Turtles and Legos never get old. Matt may be gone, but he’s still around.

About That Photo of Ted Cruz and Fidel Castro

I follow many active liberal folks on Twitter. It can be great to share links to articles and ideas that we share. That kind of thing can also be a bit hairy when people don’t look into sources and blindly post items. I’m sure I am even guilty of it on occasion in this culture of immediacy.

Something I see a lot of though, is this photo of Ted Cruz and Fidel Castro.

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To me, it is obviously Photoshopped. I think people that post it want it to be real to rile up his followers. I easily did a Google image search to see that there were even worse Photoshop jobs of George W. Bush and Fidel of the same image.

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In reality, the original image was of Nong Duc Manh, the Vietnamese Communist Party chief and Fidel in June of 2007. See a news piece from the time here: http://www.telegraph.co.uk/news/worldnews/1553577/Castro-could-soon-resume-power-in-Cuba.html.

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Whoever messed with the photo did a flip of the image and added the head. See flipped below.

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Yes, the images are funny. We risk not being taken seriously though when some people sharing the images accept them as real and pass them off as such. It’s like like when we see others passing off pieces from The Onion and The Daily Currant, two known satirical web sites, as real. It may seem silly but it’s dangerous, just as people that watch Fox News believe all they are presented on there without looking further. So bookmark this, and if someone is passing around that Cruz and Castro photo, share this and get back to attacking those we disagree with by using facts and substance.

Help Me Help Kids With Cancer

Please donate here: http://www.stbaldricks.org/participants/jvaragona

For the 2nd time (I did this back in March of 2008) I will be shaving my head to raise money for childhood cancer research through The St. Baldrick’s Foundation. As of this post, I am at 51% of my $1000 goal. Of course I would love to surpass that by my shave date of March 8th.

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Why am I doing this? The most common question I get is: “Is that what your brother died from?” The answer is: absolutely not. Nevertheless, this is about kids suffering and dying when we could definitely be doing more to cure them and/or improve their quality of life through research.

Since its inception, St. Baldrick’s has raised over $188 million for childhood cancer research. It currently funds more in childhood cancer research grants than any organization except the U.S. government. Examples of successes through research funded by the organization:

  • Only 1 in 3 kids with high-risk neuroblastoma (the most common kind) were cured, until research resulted in a new treatment that harnesses the power of the immune system. Now almost half may be cured. This is the first successful immunotherapy for a childhood cancer.
  • In one rare type of leukemia (Philadelphia chromosome positive acute lymphoblastic leukemia), less than 20% of kids were cured, and no progress had been made in 50 years. By adding a new drug (Gleevec), more than 70% can now be cured.

Why donate to this cause and not another? I’m not here to say this is the most worthy cause for your money. However, it is an extremely underfunded cause.

  • Currently, childhood cancer research funding accounts for less than 4% of all cancer research funding allotted by the federal government.
  • About 60% of all funding for drug development in adult cancers comes from pharmaceutical companies. For kids? Almost none, because childhood cancer drugs are not profitable.

Dr. Eugenie Kleinerman, head of the division of pediatrics at the Children’s Cancer Hospital at M.D. Anderson Cancer Center says “Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved.” We could be restoring the years lost by these children due to illness and death, so they can reach adulthood, make families, and make great contributions to society. These children are someone’s son, daughter, niece, nephew, grandchild, and could be your own.

What prodding do you need to give a donation? Any amount will do and is never too small. If you or your business are willing to give $100 or more, you may include with it a challenge to me. This can be just to have me make an ass of myself and document it or to benefit your business or brand in some way, as long as it requires little to no monetary investment of mine. Need ideas?

I sing:

I dance:

I may not do either well though.

I have an audience of 4000+ Twitter followers, 245 YouTube subscribers and 608,000 views of videos I’ve posted (though many are not my own), so be creative. Let’s have fun with this and help conquer childhood cancers!

Please donate here: http://www.stbaldricks.org/participants/jvaragona

For more information on The St. Baldrick’s Foundation: http://www.stbaldricks.org/

14 Years

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

Matt, myself, and Sara at my high school graduation in May of 1999

Adventures in Diabetes: Spraying

I am a Type 1 Diabetic. I wear a pump which contains 3 days worth of insulin which is delivered to me through 4 feet of tubing that I stuff in my pants and that is connected to a catheter in my belly. Multiple times in the day I check my blood sugar. This is a story of what happened during my blood sugar check last night.

I was getting ready for bed around 1 a.m. One of the last things I do is check my blood sugar. I admit I reuse the lancets which pierce my fingers. They say they get duller with every use, but I’m all about being a Green Diabetic and reusing. So I pricked my finger to check from and I squeezed it to get the blood out. Instead of making a droplet which is the normal thing to happen at this point, blood sprayed onto my face. I have encountered a spray before but never onto my face. It was quite an experience.

Here is a depiction of what happened:

I’m not sure if this was from my dull lancets or from pricking a calloused finger too much. Either way, if I could figure it out, it could make for some great Jackson Pollock influenced, blood based art.

Here is what it really looked like on my face:

Blood spray on face

I know it’s not much, but I stopped squeezing.

For more Diabetes art by me, here’s my video “Diseased Sensations.” It’s a tad dramatic, but it does the trick.

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