Jim Varagona

Tag: charity

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.

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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/

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