Washington University Commencement
A large envelop with a Washington University return address appeared in my mailbox today. Inside, I found a commencement program. The program was not accompanied by a note; it was sent anonymously. I smiled when I saw the cover, remembering back to his graduation day in 2009. I noticed a small green tab peeking over the edge of the page. I opened to the marked page to find: ” Master of Structural Engineering: Tony Perolio, December 21, 2011.”
Tony worked tirelessly for this degree, stopping only when his hands cramped so badly he could not longer hold the pencil. His notes were flawless, containing drawings so artistic and precise that made me question what they hell he was doing all this math for. He had a knack for engineering, yes, but he’d be the first to tell you he was not the top of his class. For some, the concepts came effortlessly. What Tony lacked in natural talent, he made up for in elbow grease. He’d out work you. And then, while he was at it, he’d out laugh you, out charm you, and out love you.
I don’t know who sent the program. It was probably someone in the engineering office who was captivated, as we all were, by his smiling face and ever-flapping jaws. Or, maybe it was a fellow student who got a kick out of the loud, “grizzled war veteran” (as he called himself from time to time) who walked with a cane, dragged his books in a rolling cart, and sweated too much. Perhaps his advisor, who visited his wake to deliver the diploma, sent it. I don’t know. He touched people’s hearts everywhere he went; it could have been anyone.
My darling boy was awarded this prestigious degree, 1 month and 4 days before his death. If that’s not a lesson for you in perseverance, then I don’t know what is. What’s best about reflecting on Tony’s accomplishments is that they were never accomplishments for the sake of accomplishment. Glory, recognition, or pride never motivated Tony. As few can, he gracefully walked the line between humility and confidence. Some internal fire propelled him. I am proud.
Headstone
During the previous visits, his site was marked with a temporary tag; the “temporary” nature of it made seeing his name in a cemetery feel less real. Now, the white, deeply etched stone declares permanence, as if the date, January 25, 2012, is no longer negotiable. The sod is not yet planted in his row, so the ground is soft and you can clearly see the tracks of deer who must visit at night to snack on the flowers. He is plot # JJ-B 913 , should you like to stop by.
Tony’s journal entry 4/26/2007
Another journal entry from Tony as he contemplates death. This time, he writes after the diagnosis. This is from April of 2007, so it is just before his first stem cell transplant.
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This quick sketch is adjacent to the entry in this post.
4/26/2007
I get mad at myself sometimes when I think about my death. It kinda of feels like the ultimate in selfishness because I like it and it fascinates me. I hope that doesn’t annoy you, God, and I ask for forgiveness if it does. For some reason, though, I like trying to envision my last minutes. Who I will be with and hope I am with. When I envision a quick death, I always picture myself saying something like “Please take my soul, God” like, say, before a car hits me. Its a a loaded statement and basically a shorted version a little add-on I say at the end of my prayers. I say:
“Whenever I should die, tomorrow, next week, a year from now, or 100 years from now, and if I should ever forget to ask again, please forgive me of all my sins and take my soul into heaven.”
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What I like about this entry is that Tony had his own little understanding of how God works. Maybe he “annoyed” God? (A visual I adore: Christ throwing up his hands in despair because oh-what-did-Tony-Perolio-say-this-time?!) He wanted to make sure his bases were covered: “should I forget to ask again,” as if salvation is something that can slip a person’s mind. He had a real ask-forgiveness-not-permission friendship going on with God, it seems. And yes, I am 100% that Tony Perolio is in heaven, annoying the shit out of God as you read this.
Tony’s journal entry- 7/13/2005
This is one of Tony’s MANY journal entries. It is hand-written in his perfect, meticulous, evenly-spaced handwriting; he didn’t need lined-paper.
This entry was written 1 year and 4 months before he was diagnosed with leukemia.
-Jess
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Scribbled in his journal on 3/18/2006, eight months before he got sick.
7/13/2005
Death. I was thinking about it today. It’s been popping into my mind a lot lately. I think it may be because I’m not quite as accepting of it now. I make plans for things in advance and they just seem like they will happen. Will they? Well, it will be cool if they do.
When I was in [the Marines], it was easy to be accepting of death. Especially oversees. I was comforted by my acceptance. I prayed to God at night, like I still do every night, thanking Him for what life I’ve had, and telling Him that I would be grateful if I died tomorrow. I was calm about it.
I remember unpacking my things when we got back from Iraq. The stuff that they stored on base for us (T. M.O). I remember unpacking and I remember that when I had been packing it all, I felt as if I might not be around to unpack it. And yet, there I was—unpacking. Life after Iraq was just going to be this cool bonus. I don’t want to waste a minute of it.
Lately, though, I am careful. Sometimes too careful. I don’t want to walk with traffic on a sidewalk. Checking, rechecking, and checking then rechecking again my knots while climbing. Some people may call this smart. I think I am starting to think of it as selfishness. If I go, that’s fine. It’s time to go. God will decide when. There’s no use in worrying so much. No, no- this is not a stupid death wish. It’s just, who am I to interfere so extremely with nature?
Rethinking
Writing this out helped me to make (a little) sense of things. Perhaps reading it will do the same for you. It couldn’t hurt..
I have two frameworks of thought that help me to deal with Tony’s death.
1) His death was always already happening.
From the moment Tony was diagnosed (hell, from the moment he was born), Tony was going to die from leukemia. From this perspective, the future was not stolen from Tony. It was never there. He had a path for his life; it was completed in full. Those of us who were lucky enough to be in Tony’s short life were there for a reason—We were present and involved because we had something to give and something to learn. So, our marriage was never a marriage for a lifetime. It was a sweet season of my life from which I was to give, to grow, and to be changed. I am honored that the powers-that-be assigned me to this noble purpose: to be some form of brightness in his life, to help ease this pain, to create laughter, to help carry him through. Though I was labeled as the “caretaker,” it is very clear to me that I was the one being taken care of.
My prayer is that my tears and pain become those not of sorrow for a future together lost, or for a friend lost. I want my pain to be seen as a representation of the influence Tony had on my life. Growing hurts. Perhaps the strength I will find at through this grieving process is Tony’s last gift to me. Perhaps the tears that fall off my face as I write this are the last of the tangible proof I have of Tony’s influence on me.
My biggest regret is that I did not look at the situations through this lens during the time that Tony was alive. If I had known that our time together was going to be so short, I would have done things differently. I was always hoping for and waiting for something that was never going to happen. In some ways, I fear that I was loving the idea of Tony (what I saw as his potential for our future), and maybe sometimes I was not loving Tony was who he was at that very moment. I can’t be too hard on myself; I delighted in him on a daily basis. I just wish I would have been better at taking one day at a time.
Be gentle. Be patient. This is what Tony taught me. And that is no tragic ending.
2) Tony’s death was part of his life.
Before Tony was admitted, we had a few precious nights together during which we spoke very specifically and openly about our fears related to the upcoming procedure. Death was Tony’s second-best option, he said. He was tired. He was so weak and (this is the part that just kills me now) he was sick of being a “burden.”
I think he was trying to make some kind of deal with God. He said that if he got better he would make a difference: He would write a book, volunteer at the hospital, do things that would influence people’s life.
As it turns out, Tony’s death was necessary in order to accomplish the things he wanted to do with his life. In almost a strange Christ-like way, Tony’s death was part of his life. It is his platform. People, myself included, don’t really think about life until they are confronted with death. Tony had a message to share about life, which wouldn’t be fully heard and understood without his death.
Now that Tony is gone, all the things he wanted to do while living are happening. I am overwhelmed, daily, as I think about how his life serves as a model to thousands. People I don’t even know are writing to me, saying what an effect Tony had on their lives. Here’s one very small but beautiful example, of hundreds:
We’ve never met, but I know Jaime and I saw her post last week about Tony. I found it really upsetting that such a young, vibrant man could pass away so suddenly and I read a few of the links she posted about him to get a better sense of what was going on, what happened, and what it all meant. I never knew him and I am sorry that I did not.
After reading about Tony, I was immediately struck by how this man chose to spend his “one wild and precious life,” and it’s staggering the effect he had and will continue to have on those who never even knew him. He was more than brave. He was pure courage, in the literal sense. I don’t need to have met him to realize that he did what almost no one can do: live and act from the heart, without compromise, without hesitation, without fear. He was more than passionate. He clearly embodied love, and poured it into everything around him. The world is a better place for having him in it, and though he is no longer among us in a physical sense, his influence will persist indefinitely, powerfully, majestically. I know he influences me. He’s one of those rare people who lights the way.
I agree: he’s just one of those who lights the way. These paradigms of thought do not take away the pain of Tony’s absence. They do, however, help me to see his life, his death, and my special part in it all in a very new and empowering light.
Stop back weekly: I’ll be posting stories.
Slideshow
Here is the slideshow of Tony’s life that was played at the wake. Many thanks to Eric Herbst and Steve Kozel for helping me with this.
Eulogy
Here is the text from the eulogy I wrote for the boy. There is so much more I’d like to say about him. I am slowly working on it and will be in touch about my progress. (For instance, I want to tell you more about his accomplishments in the Marines, in school, in music. I’d like to tell you the story of when Tony told all of our friends that I had a “bun in the oven” when I most certainly DID NOT, or when he decided to change into the exact same outfit as my brother during a family function). I will also upload the slide show from the wake later this week.
Tony was so worried about turning 30 that he started telling people he was 30 when he was still 29. He thought this little white lie would help him ease into the new decade. I didn’t understand his logic at the time, but after living with Tony one learns to let some of the little quirky things go. To me, 30 wasn’t a big deal, but to Tony, it was a representation of time passed—time that he so desperately wanted to make the most of.
It’s easy for me to think that Tony was robbed of precious time, that we’ve been robbed of a precious, beautiful person. But when I reflect on Tony’s life, it becomes inherently clear that Tony’s life is NOT a story of stolen or wasted potential. In fact, it just might be the perfect example of potential fulfilled. As only Tony could, he found a way to jam-pack a long lifetime of love, friendships, and adventures into just 30 short years. So his story isn’t a tragic one, because that would imply Tony left this world a dissatisfied or defeated man. Rather, his story is the story of a hero whose time in this world was purposefully and meaningfully spent.
As a decorated scout sniper with the 1st battalion 7th Marines, Tony was among the first to enter Operation Iraqi Freedom. Somehow, amidst the dust and the chaos, Tony graciously befriended locals, sharing tea and flatbread with them in their homes at every chance. He became so close with one Iraqi family in particular that its matriarch took it upon herself to call Tony’s mother, Connie, jolting her from sleep at 2:30 am. She said that her family had become friends with Tony and that her whole family loved him. She chatted about the family’s interaction with Tony. Apparently, our sweet and ever-trusting boy had given this family his mother’s home phone number, so they could call and check up on him after he left their city. Electricity was intermittent in this war-torn country, but the Iraqi woman chose to make (and pay for) this call because she wanted to deliver a message to Connie: she said, “You are blessed to be Tony’s mother and he is blessed to be your son.” Connie’s beautiful son made friends all around the world.
One of Tony’s great joys was helping Jon Hardy and the Public record their award-winning album, Working in Love, a title that equally fits Tony’s life story, for he had an uncanny ability to draw love out of any situation. The producer of the album recalled, “He was battling leukemia at the time, and still was giving the rest of us a run for our money in stamina, positivity, and excitement to be making music together. He was non-stop energy and smiles during those sessions, even though we all knew he was weak, and fighting with all his might against his cancer.”
When Tony’s health declined and he could no longer play the drums live, he kept up his chops by recording cover videos on Youtube, where he became a cancer spokesperson of sorts, providing drum advice and life advice in equal measure. Though a weaker man may have walked away from the kit altogether, Tony didn’t let GVHD take away what he loved. And by fighting to remain himself, he cultivated a Youtube community that brought him so much joy, and vice versa. He has 1,948 loyal subscribers from around the globe, 650 THOUSAND views, and he read and responded to their every comment. We’d be in bed, just about to fall asleep, and his phone would notify him of an email… However tired, he’d roll over with a little grin on his face, explaining “Welllll, maybe it’s a YouTube comment.” A testament to his subcribers’ loyalty: one of his videos has 148 “likes” on it and 16 “dislikes.” One of his subscribers wrote in a comment under the video: “16 people need to go kill themselves.” This cracked me up, and I am sure Tony’s twisted sense of humor also appreciated it.
One of those cherished YouTube friends, Evan Chapman, who produced the Bon Iver tribute video for Tony that many of you saw, is here from Indiana to play for Tony today. Evan and Tony never met in person, but began a friendship through e-mail. Evan’s offer to travel here today is yet another testament to Tony’s charisma and warmth.
I’m happy that Evan was able to see Tony for who he was, because it took me a while before I let Tony grow on me. I met Tony at Upper Limits climbing gym in 2005, and if you met Tony in 2005, he was probably sweaty and bursting at the seams. Upon return from the Marines, Tony enrolled in a structural engineering program, started working at Upper Limits, camped and climbed as much as possible, found a band (or two) to join, and started making friends like it was his job. Tony would talk about this time in his life with such a manic excitement….and I didn’t quite know what to make of the giant man with tons of energy.
We had our first lunch date the day before I left to spend a school-year teaching in France. We had less than an hour before Tony needed to be in class, so we grabbed a quick bite at the Bread Company (an establishment I would later grow quite sick of, thanks to Tony). As we parted, knowing that we wouldn’t see each other for 9 months, I got my first real taste of the infamous Tony hug. We were standing in the middle of the parking lot as he wrapped his giant arms around me and squeezed. If he squeezed any harder, it would have hurt, but he was a hugging expert, so he knew right up to the edge of the hurt-line. I remember turning and walking to my car, angrily scolding myself for not accepting Tony’s multiple (excessive) offers to lunch sooner. I worried that I’d missed something really special…. So thankful I didn’t.
When I got to France, he was the first person I emailed. When I got homesick, he’s the person who comforted me the most, writing me long stories about how he coped with homesickness as a Marine. When Tony was in remission, we met up with a mutual friend in London for a long weekend. I told him not to travel (he made me and everyone else a nervous wreck) but nothing would keep him away. He’s the only boy I know who would travel across the ocean for a girl he’s never kissed and only lunched with once. I missed my plane to London and arrived to the hotel 8 hours late, but there I found my ever-patient Tony sitting straight-up on a couch in the lobby, facing the door. He’d read the entire London travel book, but he didn’t budge all day, trusting that I would show any minute. When I ran through the door, I got my second Tony-hug and I was hooked. Eventually, later in our relationship, I would just curl up my arms in front of my chest, and let Tony engulf my body with his. I never felt safer or more loved than when I was the subject of one of Tony’s hugs.
He was a golden, perfect husband. Steady, faithful, encouraging, compassionate, and so, so patient. I’d come home from work every day and find my smiling Dove sitting in the brown chair by the door. If I passed by without kissing him, I would hear him yelling across the room, “WHAT AM I? CHOPPED LIVER?”
Tony thought everything I did was spectacular and interesting. He’d ask me so many questions about my day that I would bore myself answering them. If I had a worry, sadness, or insecurity, he’d drop everything and give me his full attention, building me up with every sentence, instilling in me a confidence I didn’t have before.
He regularly talked about how, when he got better, he wanted to “make it up to me” by doing all the dishes, cooking, laundry, shopping, cleaning—everything. One night, he was talking about how badly he wanted to take care of me, he proclaimed that he hoped I would get cancer next so that he could have a turn being the caretaker. I shot him a look and he quickly back-pedaled after realizing how absurd that wish was, but the sentiment was acknowledged.
If my purpose in life is to help carry this beautiful person through his brutal fight, to make his struggle easier, then that is fine. There came a point where I had to realize that Tony was no longer living for himself; he was living for all of us. He would say “Jess, you have the more difficult job” which we all know isn’t true. Before going into Barnes on January 4th, he worried about how sad his mom and dad would be if he died. He wanted to protect us all, which is why we thought he was fine when he wasn’t.
A drummer, a climber, a Marine, a classmate, a runner, a student, a son, a friend—Tony had all these layers of identity. And he didn’t know how to be anyone but himself. Tony was unapologetically Tony. In your emails to us, you’ve told beautiful anecdote after beautiful anecdote about how Tony welcomed you, set you at ease, impressed you, loved you and carried you. I hope you’ll continue to tell these stories forever.
Tony’s adventure-filled life was certainly full of extraordinary situations which make for great stories, but I’d also like to make sure that we continue to talk about how much, well, life Tony got out of everyday minutiae. Let’s keep talking about: How much Tony loved popcorn. How he referred to himself in the third-person, most often as “Toneman” or “Haw-eye Jackson.” How he used more emoticons per day than all of us combined. How his eyes would light up if you wanted to watch him play a video game or talk about aliens and/ or ghosts. How he would relish in awkward situations, many of which were somehow linked to Tony trying to hug or kiss someone who didn’t want to be hugged or kissed.
Most of us know how much Tony loved candy. (In, fact, as I sort through Tony’s belongings, I am finding bags of skittles and peanut m&m’s that he squirreled away all over the house…in case of an apocalypse or something). About a year ago Tony became OBSESSED with Jolly Ranchers. They were just hitting the spot. I’d have to buy them in 5lb bags, and when I refused to drop everything and run to Target to buy more, he’d just send Louis or Eric to pick some up when I was at work. Anyway, he’d make little snack-baggies full of “Ranchers” and tucked them into the pocket of his pants, his bookbags, the median of his car, his nightstand, and anywhere else he thought they might be useful. He’d drive me nuts as he’d lay in bed and *crinkle crinkle crinkle* a Jolly Rancher open and then *CRUNCH* –he’d chew it. In bed. We were averaging about 10 Ranchers a night and I got fed up with all the commotion when I was trying to sleep. Tony, as usual, tried to be ultra-considerate by pre-unwrapping his Ranchers before bed and lining them up on his belly so he wouldn’t disturb me as much. But then there was still the crunching. One night, I was particularly tired and probably crabby and I asked him, “Tony! I don’t understand why you insist on this! Can you please not eat Jolly Ranchers in bed?” He paused (Rancher in mouth) and said, “Jess. It’s a quality of life thing.” That shut me up for good.
During his last year or so, Tony couldn’t live how he wanted. He couldn’t run like he used to, or even walk the dogs. He couldn’t stand long enough to cook family dinner, or play drums for more than a few minutes, if at all. Despite all of these struggles (struggles that would bring the rest of us to our knees), Tony found a way to squeeze the most joy out of life with the resources he had—even if that resource was a bag of Jolly Ranchers. I miss him crunching in our bed, and I am so proud of the lessons he humbly, unknowingly taught us.
Riverfront Times Story
A really nice story about Tony.
http://blogs.riverfronttimes.com/rftmusic/2012/01/tony_perolio_rip.php
Memorial Donations
In lieu of flowers, I’d like to suggest that you make a donation in Tony’s name.
Because Tony hated cancer and loved puppies in near equal measure, the following two organizations have been selected. I think he would be happy with these.
1) The Gateway Chapter of the Leukemia and Lymphoma Society. This organization supports research and assists families with medical bills. In fact, they covered some of Tony’s bills when he was undergoing his first transplant.
To make a donation to the LOCAL chapter, you can call or mail a check. Indicate that the donation is in honor of Anthony Perolio.
314-878-0780
77 West Port Plaza, Suite 480
St. Louis MO 63146-3125
http://www.lls.org/#/aboutlls/chapters/gat/
2) Stray Rescue of St. Louis. This organization rescues animals in need of medical attention, rehabilitates them, and then helps to find adoptive homes. Check out the website– it does a better job than I can do of explaining their mission. http://strayrescue.org/node/32
To make a donation in Tony’s honor, fill out the “tribute form” under the Memorials/ Tributes heading. Here is the link: http://strayrescue.org/content/donations
Tony’s “next of kin” (…..me) will be notified of all donations made in his honor.
Thank you. ❤
Jess
Visitation, Funeral Service, Burial Information
Logic suggests to me that a heart can only feel heavy if it is full. Tony filled my heart to the brim. And so, it is with a very, very heavy heart I have to announce that Tony died yesterday, January 25th around 12:45pm. Though the transplant was successful, his lungs, which had been attacked by chronic and progressive GVHD, could no longer sustain him. He passed peacefully and painlessly, surrounded by his family.
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Visitation
Monday, January 30, 2012. 2-8pm
Kutis Funeral Home, Downtown St. Louis Chapel
2906 Gravois Avenue, St. Louis, MO 63118
for more info- http://kutisfuneralhomes.com/Kutis-Funeral-Homes-St-Louis-Locations.html
Funeral Service
Tuesday, January 31. 11:15am
The Journey church
2833 S Kingshighway Blvd
St. Louis, MO 63139-1006
for more info or a map: http://journeyon.net/locations/tower-grove
Procession
*We expect the procession to the cemetery to be large, so I recommend you bring your own directions, in incase you get separated from the group.
* We are not allowed to bring flowers to Jefferson Barracks, FYI.
Burial
Begins promptly at 1pm on Tuesday, following the service
Jefferson Barracks National Cemetery
2900 Sheridan Road
St. Louis, MO 63125
Tony GVHD News 
