rett.org

by Charles Nearburg

My Dad once told me that you’re known by the quality of the company that you keep, and all of these young men and women here, all of you, and Shanna are certainly testament to the quality of Rett’s life and his quality as a person.

Now those of you who know me, which is probably most of you … and Dana, Anna, and I do appreciate everyone of you being here … know I am something of a control freak and like to have everything nailed down and this effort today is an homage to Rett, who would have told me, “Dad, stuff all that and live in the moment, enjoy the day and feel the day,” and so this is, (holding up the notes), my very first draft. It’s not Dana’s or my 6th or 7th or 10th or 15th. So here we go. It may not flow real smoothly, but we’ll get there.

The band “Sonic Youth” as everyone down here (where Rett’s young friends are sitting) knows was one of Rett’s early music discoveries. (I’m wearing the T-shirt.) This was his favorite T-shirt. A very frequent question from Rett’s friends was, “What’s going to happen to the Sonic Youth T-shirt?” Well now you know! And this was his orientation card for his registration at MICA, Maryland institute College of Art, (Charles is holding up the card that was hanging from his neck on a sport’s band), and it says, “INSPIRE.”

We have lived in some fear of this day for 11-1/2 years, but thanks to you, our friends and our family, we are here to celebrate Rett's life, now and forever.

In trying to say too much, I might say too little, and so as my great English teacher, Victor White, would advise me, “I’m going to try to keep it to a minimum.”

First, I would like to take a moment to read the names of some young men, women, and children who have preceded Rett in death by cancer: Callie, Charlie, Aemon, Jennifer, M.E., John Marc, David, Bryan, Meredith, Chuck, Rob, Carlton, Margo, Clayton, and a young man that we met in Nebraska when we were at NIH, whose name I’m afraid I don’t remember.

I’ve got to tell you that I’ve thought about this moment off and on for those 11-1/2 years: in the shower, in my car, working on my car, standing in a stream with a rod in my hand, you name it. It is always easiest to focus on the doing things of a person’s life and not the being part of their life. I’m going to try to spend not so much time on the doing part but to deal with the being part of Rett, the important part.

I want you to come with me, through Rett's door and into his room and into his life. To enter into Rett’s room, you have to stop and read what’s on the door. It says:

“Hi – This is my room. Please leave any malicious intent behind. r.“

And on his window, in handwriting different than Rett’s, but obviously it’s significant to him because it’s been there for years:

“You have built a barricade to block me from your view and stood up safe behind closed gates. I'll clog my veins with glue. r.”

We’re not going to have a discussion about those words right now; I’ll leave you to reflect on them.

So where has Rett come from and how did he get where he is? Well, thanks to my keen application of knowledge gleaned birthing class, Rett was very nearly born on the front seat of a Volkswagen Scirocco on North Central Expressway about 5:30 in the morning. As Dana was saying, “He’s crowning! He’s crowning.” I was going, “but you haven’t done this yet, and you haven’t done that yet.”

So we whipped into Presbyterian. I was honking the horn, flashing the lights and they came running out and I said, “She’s giving birth. She’s giving birth.”

A nurse says, “Well, let’s look.”

I said, “She’s giving birth.” The nurse took one look and said, “Oh, my God!” And they rushed us in there. In a very incongruous moment, they handed me some scrubs, opened the door to a janitor’s closet and shoved me in there to change, and I thought, “Why am I putting on scrubs in a janitor’s closet?”

Anyway, I got into the delivery room just as Rett was literally coming out and he had a smile on his face that he never lost. And then, 10 years later, we heard the news any parent or loved one dreads to hear, “your child has cancer and your life will never be the same.” Even in death, resting in his room as we mourned with him, Rett had the smirk on his face that reflected his wry sense of humor with life.

There is no way to do justice to all the highs and lows of those 21 years on this earth, or the gratitude that I have for our family and friends and how we've gone through this together.

Rett was the personification, as Reverend Bob Thompson has said, of the active child. Physically and intellectually he was always running at “full tilt boogie.” I told Rett often that he was a "pugnacious rapscallion." He always had that sly grin on his face and a twinkle in his eye. His mind absorbed everything on the first pass, often to the chagrin of his parents or anyone who would hope for some forgetfulness on his part.

It was obvious at an early age that he had a truly gifted mind, from his astonishing ability with numbers and ability to build things, to his insatiable curiosity and his emotional depth. Over and over the last few days, his friends have commented on Rett’s ability to look at them and read what was going on; to know when to call, to know when to hug, to know when to get on their case, and just to know what to do and when.

Rett could see to your essence and bring it forward with humor and grace. He could make you laugh at your foibles and when we got carried away, he could bring us back into line with humor and straight talk. Rett didn't take life as it was presented to him. He had a solid vision of what he wanted and he doggedly pursued it. His art was all about the conveying of emotion. From pyromania, to computer games, to music, to photography, to driving fast, and other nefarious activities, it must be said that he never lost the charming part of his rapscallion nature.

He was so fortunate to find in his life the young men and women seated here and elsewhere around the country that are an incredible collection of friends who brought their own creativity and roguish behavior the group. These last two nights we’ve shared gales of laughter as Rett's friends opened the portal to the private part of their real life, that part we, as parents, all know as the time between midnight and 6:00 a.m. It appears that it was always filled with good times, certain inebriating substances and mischief, but lacking in any malicious intent. They shared in loving words what Rett's friendship meant to them with the underlying element of how he loved and cared for them, but also encouraged them to push their boundaries intellectually, emotionally, and experientially.

As cancer would claim one aspect of Rett's life, he would never indulge in self-pity, but would turn a page and bring to the fore another talent that God had blessed him with.

His first round of treatment lasted almost a year and half and involved radical surgery that included the removal of a major part of three ribs and a very harsh a chemo regimen that his doctor described as “industrial strength”. It included, and unfortunately I’m sure many of you have experienced these drugs: Adriamycin, Cyclophosphamide, Vincristine with liberal doses of radiation just to spice things up. His chemo required a 5-day stay in the hospital every 3 weeks. Throughout the harshest, most aggressive cancer treatments, Rett continued to press himself in every way. Physically with soccer and baseball. Intellectually with school and art, and emotionally with the depth and quality of his friendships.

Marietta Johnson reminded me today that even missing a full one-third of the school year; Rett was one of the top two students in his St. Mark's class that year. In the 4th Grade, while undergoing the horrific chemo, Rett took six Continental Math League tests at St. Mark’s. These tests are not studied for and are participated in by top schools across the nation. At the end of the year, Rett was honored as one of only twelve students in the nation to have a perfect score on all six tests.

In contrast to his life with us and the forced march that he had with cancer treatments, Rett's life with his friends was a cancer-free zone. Absent his nightmarish disease, he wanted to be known and accepted for who he truly was, regardless of the cancer. And you gave him that gift. He was courageous and hopeful, willing to undergo without complaint any treatment, regardless of the pain, as long as, Naomi reminded us last night, he felt the logic behind it was sound.

It may take me a little while to get through this part because I’ve got lots of lines and squiggles.

After the first year and a half of treatment, God blessed us all with a glorious two years in which he appeared to be cancer free.

With his heart protected by a custom carbon fiber chest protector made by one of my good racing friends, his soccer team won a Texas State Championship. He caught the winning touchdown in the last minute of the Middle School Championship football game. And he won a Top Gun Award in the motorcycle hill climb competition at the San Juan Off Road Doo-Dah in Telluride, Colorado.

After that and until his death, there was never any appreciable time that he was not in treatment or that his life was not imperiled. He gave Dana and I and his doctor, Naomi Winick, the great gift and responsibility of entrusting us to guide his treatment. From the time of his first recurrence, Rett was self-taught in his fields of interest, and he devoted much of his interest and time to developing deeper friendships. His computer acumen was legendary, as Shanna has referred to. He was self-taught in Linux and always at the cutting edge of new software and applications. He had one of the first blogs and wikis on his www.rett.org website. In fact, one of his favorite pastimes during our many lengthy stays in hospitals in Dallas, Bethesda, Houston, Baltimore and San Antonio, was hacking into their computer systems. I mean, you could just see the light come on in his eyes every time he spied into a vacant office with a computer sitting in it.

What he really liked to do, and he had more time to do this at the NIH than anywhere else, was to hack in and link their computer to his at home because he could then use their speedy T4 line from Dallas to store additional music. Helena told us that Rett told her he had enough music stored to listen to a new song, nonstop for two years straight. But he never once interfered with their proper operations, and he always has that twinkle in his eye as his nurses and doctors freaked out when they would find him delving into their computer. And, it really would freak them out!

Anyway, when they could swallow their paranoia and ego, Rett would often show the doctors how they could do something better with the data resources as their disposal. Rett's doctors loved Rett once they could accept and appreciate that his intellect was on par or superior to theirs. They respected his honesty about how he felt and whether he would or would not follow each aspect of the proscribed treatment.

When Rett applied to St. Mark's, the Admissions Director told us, “You two are undoubtedly intelligent, (which I appreciate him giving us credit for) but,” he said, "Rett is much more intelligent than you are and you will do well in your life with Rett to not argue with him when he tells you something that you can’t possibly believe is true. Go do your research before you confront him and you’ll save yourself a lot of embarrassment.” And he was right.

One of Rett's greatest gifts was his ability to have his own strong personality without taking anything from those around him. He didn’t need to derive his power by taking someone’s away. To the contrary, this trait enabled those in his presence to be who they truly were, which is not to say he would not call you a fool if you acted like one. You see, running your own company is a bit like trying to be a Dad, and one of the things you have to sort out is how to get people to challenge you. Well, with Rett, that was never an issue! I never entered Rett’s room with a computer question without being confronted by what a dummkopf I was.

Rett and I also cultivated the liberating ability to have a fair fight, which helped us both to relieve the tension that comes with living with such huge uncertainties. And I think above all else, and those of you who live with cancer know, it’s the uncertainty that really drives you crazy. When you’re in a treatment, when you know what the heck to have to do tomorrow and where you have to get to the next day, you can deal with that. But it’s the hours of waiting for a scan and the hours of waiting for the results … that literally will drive you to the edge.

I’d like to close with a few vignettes from Rett's life. I’d like to start by reading a little essay that he wrote in response to a question in his application to MICA. “Essay #3: Define a single moment that has most affected your path as an artist.” I think you will recognize the relevance today of his thoughts:

“The life of a visual artist can be seen as a series of visual experiences. The essence of development of an artist can be seen in his continual growth through new experiences. The following events, with their visual nature are inherently autobiographical. These events are a significant part of who I am. My development as an artist and designer has been a fluid one. Picking a single defining visual experience would be contrary to the very nature of the process. I am drawn toward notions of duality in trying to explain, ‘Without light, no dark’.

Without contrasting experience, there is no relevance. A green tomato is more interesting if you have previously only seen red tomatoes, so I present two moments of my life hoping to, not only show their importance, but the significance of the relationship between the events.

The most powerful visual moment of my life was viewing a short video at the age of eleven. The video was of my open chest during surgery. I was overwhelmed and could barely watch. I am sure the memory has been distorted over time by my biology classes and autopsy clips on TV. Yet it remains in my mind with uncanny clarity. The memory is of the color of red, the complexity of the tissue of my body and the movement of it all. The pulsating livid flesh, it was me.

I saw a painting in an art museum in France. It was an orange canvas with a signature. I was appalled. This embodied ‘Anyone could do that.’ I saw no technical merit whatsoever. I scoffed and moved on. Today this piece is my sole memory from the museum. Only looking back do I realize the significance of that experience. It was my introduction to the world of conceptual art. The revelation that anything could be art given the correct context and time began at that moment.”

Now I don’t have this written down but having read that to you, I need to tell you that when Rett finished his first and only semester at MICA, he had three culminating projects. I won’t describe all of them to you, but there was one that was particularly moving, and later we were told by the Dean of Students that Rett’s professor, who had taught at MICA for 30 years, had come to her when she heard that Rett was not going to be coming back for the 2nd semester, and this professor told Teresa that in her 30 years of teaching that there were but a handful of projects that she would always remember and that Rett’s was one of them.

I’ll do my best to describe the project. He took a respirator that fits over your nose and mouth and he took a cardboard box and he wrapped the box in duct tape and he funneled the breathing tubes from the respirator into a manifold with a vertical tube that he made of PVC tubing in the box. He constructed a cylinder that had a clear lens on the top and bottom and on the top was printed the word "NOW", and the cylinder would move up and down within the PVC tube as you inhaled and exhaled through the respirator. To this he added a light underneath the bottom of the tube, a red light I might add, and at the top of the tube he mounted an “I-sight” Apple camera for a MAC. MACs were one of the true loves of Rett's life. He plugged the camera to a computer and screen. He then turned out the lights and asked someone from the class to come up and breathe into the respirator. When they did, the word, "NOW", got bigger and smaller, bright red and dark, as the breathing moved the cylinder up and down the tube, drawing the obvious parallel between the beating of your heart, the breath of life, and the immediacy of this moment … Given the way that Rett and many others with many diseases die with respiratory failure, it is easy to understand the raw emotions the teacher said were evident in the classroom. She said that a number of students were crying and that they spent a lot of time with the box. When she talked to them about their reaction it was because they had had relatives or friends who had struggled with the breath of life.

Okay, three little stories. The night before Rett's first surgery, we were at Children's Hospital and I was spending the night with him and I leaned over to pray with Rett and when we were done, I said, "Rett, I would give anything if I could take this cancer from you," and he looked at me with his big blue eyes and he said, "Dad, don't say that. They can cure it in me, but we don't know what it would do in you." I forever felt I could see Jesus standing with his hand on Rett’s shoulder as he told me this. I could not, and still cannot, fathom how he could have the grace, faith, and maturity to say those words to me.

The next vignette happened at Halloween, near the end of his first year of chemotherapy. He was as bald as a cue ball and he was going trick-or-treating with Johnny Francis and Annie. And a couple of days before this, he came to me and said, "Dad, do you have an old briefcase?" And I said, "A briefcase. What's that for?" He said, "For my Halloween costume." And I thought, "Okay, what now?" So I went and got him a briefcase and I said, "What are you going to do with it?" And he said, "Well, you'll have to wait and see."

So anyway, come Halloween night, Annie comes out dressed as a Victorian Lady. And Rett walks in and he's got a blazer and tie on. He's got his blazer on and he's got his slacks and he's got his dress shoes all shined and he's got the briefcase and on the side of briefcase, it says, "I am a salesman from the Hair Club for Men. And remember I’m not only the owner, I’m a client.” And you know … that was Rett, I mean, right there … I was momentarily appalled and then I just thought, "Now how unbelievable is this?" and then when he came back that night, I said, "Well, Rett, how did it go?" and he said, "Oh it went well except for one silly lady who asked me if I'd shaved my head for this costume."

This is the last one. As I said earlier, we cultivated the art of the fair fight but we didn't exactly get there on day one, and we didn't go to any seminars on how to do it. One evening we were in the kitchen and I don't know what we were arguing about, something probably meaningless. And at one point … Rett and I sort of knew which buttons to push. I'm sure some of you all can relate to that … and he kept pushing my buttons so I started pushing his buttons and finally, actually this is a triumph for me ... I got him so aggravated he threw a glass of milk in my face.

I want to tell you a couple of things Rett believed in. In the end he did believe in Jesus Christ as his Savior, although I will say that his struggles and tribulations certainly tested his faith and it wasn't something that he wore on his sleeve. He had a wonderful education here and at St. Marks and at Highland Park and at MICA. Rett believed in NORML, which works for the legalization of the medical use of marijuana. He believed in Creative Commons, which is an organization that fosters the appropriate sharing of digital artwork online, and he supported cancer research. He supported it with his body and his spirit and his mind.

I want to thank Dr. Naomi Winick, Dr. Ted Votteler, Andrea, Dana, Kim, Cece, Samantha, and Steve, who made Rett’s life at Children’s so much more bearable. And many thanks to Dr. Dan Meyer, Dr. Lee Helman, Dr. Lisa Domiteaux, and Dr. Mike Madigan.

About an hour and a half before he died, Rett motioned to me. He was having a great deal of difficulty breathing and speaking and Naomi had been there with us most of the afternoon but she had to run home and see her kids. He was looking around the room and he motioned me over and he said, "Tell Naomi thank you and that I love her." And it was only then that I really knew, and knew that he knew. And my brother, Mark, was whispering to Rett and asking him if he was afraid. Rett calmly said, “No.”

As Anna said to Rett these past few evenings, "Rett, even though you are not with me, you will always be my brother." Dana said, "You lose your children a myriad of ways. We have been losing Rett to cancer for 11-1/2 years. We rejoice that he is now relieved, free from pain, free from the limitations and imperfections of this world. We rejoice that he is in the arms of the loving and gracious God Almighty.”

Many, many times over those years, I would, among other things, pray for a miracle and I continued to do that pretty much up until the night before he died when I was spending the night with him at St. Paul's. And that night I prayed to God that if it was time for Rett to pass that he would be able to do so painlessly and with comfort because we known many children with Ewing's who'd had long and excruciating final passages. And as I was thinking about that and thinking about praying for one more miracle … you know all of a sudden I felt like an idiot … I realized that Rett was the miracle. He was a miracle to me, to our family, and I know that he was a miracle to most all of you who had a chance to know him well.

With Dana’s help, one of the things that Rett instituted with his friends at our house next door was “Art Night” where they would gather whatever art material everybody had laying around and they would do art. They would do it on paper. They would do it on concrete. They would go color Harlan Crow's “Bears” over on Lakeside and they were actually very disappointed one night. They spent the whole evening coloring those bears with chalk, so nothing would be lasting, and damned if it didn't rain early the next morning before the world got to see their handiwork.

Last night Megan felt like it would be a great idea to have another Art Night and we said, "Well let's just paint the walls." And so their works are inside and I hope you'll go in the house and look at all the artwork that comprised their memories and their thoughts, however rambling or seemingly diffused they might be, of Rett. It's really a wonderful testament and a wonderful memorial.

Finally I don't think the great Dr. Martin Luther King would mind me honoring him and Rett by saying, "Free at last. Free at last. Good God Almighty, Rett is free at last."