How our journey began
Our story begins with an accident. On May 15, 2015, Will, a spunky, athletic 6th grader, was playing tag on the playground during recess when he tripped over an exposed tree root and landed face-first against a balance beam, suffering a traumatic brain injury. They thought it was just a bad concussion, but soon Will started getting burning pain in his feet, then in one leg, then in the other, sometimes both, on and off, in any combination. After seeing a team of concussion specialists, pediatric neurologists and pain specialists, Will was diagnosed with CRPS, (Complex Regional Pain Syndrome), which is a neurological misfiring condition where pain signals from the brain get sent to other random places. They described it like turning on the light switch in the living room, but the lights go on in the bathroom, or the kitchen. Very little is known about CRPS, so Will went to Boston Children’s Hospital, where they were researching and treating CRPS. Painful as that was, the hardest part was returning to school after spending 8 weeks in Boston. Then Will discovered that who he thought were his friends, really weren’t. At school he was made fun of, called a faker and phony, and was set up to get in trouble several times. One day one of his “friends” told Will that he had no friends, everyone thought he was faking his injuries, and he should just kill himself. This sent Will directly to a maximum security psych hospital for several weeks. Over the next two years Will would be home very briefly in between long stays at different psych hospitals, eight different times. Even after returning home to stay, Will was attending therapy sessions several times a week, along with continual medication adjustments. His body and personality became very different and his athleticism and passion for playing sports was mostly gone. Will missed out on all-star teams, good friends and positive role-model influences. However, through a lot of pain and hard work, each month Will became a little more stable, and a little more able to cope with his emotions. He got a rescue dog, “Benny,” that helped him focus and find purpose. Benny was someone Will could take care of, train and teach, and take outside to go for walks. Benny was also a good listener to Will’s emotions and was always so happy when Will came home. (You can see his happy, after-running-in-the-park face. . . )
Will is now 19, and deals with CRPS pain, and emotional pain, every day. He still sees pain doctors, has different treatments, and works with therapists every week. He has finished high school through several different special programs and schools, has worked in stables taking care of horses, has become a national tournament-level bowler, and was even in a video telling his story, and about the horse he took care of, as an animated character. (Click on the button below to see it). Will now works taking care of horses and for Amazon and really enjoys his night crew buddies.
Throughout all this, I was trying to keep my band teacher/musician life going, and my wife Misa was a Preschool Director in New York City, and we were taking a lot of time off to take care of Will; getting him to hospitals and doctors, and never leaving him alone. We also had Will’s younger brother and older siblings to take care of too. We soon found that the specialized hospitals and treatments do not take insurance, so we were left with a mountain of bills, on top of all the anguish of almost losing Will and trying to help him through it all.
I tell you all this because we feel that no one should endure a story like this feeling alone, or with fear, doubt and overwhelm as one’s only companions. You are cool. These experiences are important and will be for your good. We want to make sure you know that whatever others may say - the doctors, the schools, the “friends”- we want you to remember that you are cool! You have the ability within you to lift yourself up, keep going, get stronger and overcome and improve. And when you do, you can help others do the same.
U r kul. Lift up and strengthen.
So, what does “U r kul.” mean, and where does it come from?
“U r kul.” is an expression I’ve been using for years, at the end of emails or texts. I started using it as poking fun at the texting language kids use, and, (maybe unfortunately), how they write all the time now. So, yes, I know it’s not spelled correctly. (I have my BA in English…). The meaning behind this is that it’s imperfect, like me, like everyone, but it’s original, and brings a smile to those who understand it. It’s kind of immature, but it’s honest, direct and informal, as kids are, (and many of us). It’s in a texting kind of format, which is how most bullying happens nowadays, and where it does the most damage. How uplifting would it be to receive “U r kul.” in a text?
So, the first item I used with it was those blue wristbands, another kid-familiar thing that was a way for them, and all of us at Albert Leonard Middle School, to give to someone who needed it. They proved to be very popular! Since then it’s been so cool to hear stories of kids of every age who have given them to someone- strangers, kids at school they don’t usually talk to- and how they have reacted: always with a smile, or little giggle, even starting a whole new friendship. I’ve seen these reactions from people of all ages - in stores, restaurants, gyms . . . from New York to California, in all the states (at the rest stops, gas stations and restaurants along I-80, mostly) across the country, and I absolutely LOVE making those connections and learning how cool everyone is. (More such stories to follow, so stay tuned!)
Where does “Lift up and strengthen” come from? It’s a shortened version of one of my favorite phrases that says, “Succor the weak; lift up the hands which hang down, and strengthen the feeble knees.” I consider this a personal mindset: we need to find our own ways we can help others, doing what we can, when and where our own circumstances will allow. Also, to lift up and strengthen others may be the best cure for our own depression. Try it, and let me know how it goes.
Why blue and black as your colors? Well, I had to start with something, and there will be more colors and designs coming soon. To me, Royal Blue has been my favorite since I was a little kid. It’s the color of the sky on a clear, sunny day; it’s the color of the vast ocean, and limitless possibilities. (And, my 7th grade art teacher said it’s the most soothing color to the eye, so, that must be true). Musically, I love the blues, and I never get tired of playing blues tunes, with great players or beginning students, and I hope to play my great blues charts for you sometime soon. Black is a lot of things: it’s the musician color, (of necessity, not just preference), and it’s the only original color of cycling shorts, which were really weird and different to everyone when I first got into it way back when. Black was the color because it was the only place you could wipe your greasy hands after doing repairs out on the road. (ie: it forgave mistakes). And black and blue together represent bruises - the metaphorical bruises we get going through life, and we all get a lot of them, on the outside and inside. Some heal rather quickly; others never do. Our bruises make us what we are; make us stronger, make us relate and empathize with others, if we choose to see them that way. As our friends in the band Train wrote: “These bruises make for better conversation / loses the vibe that separates / it’s good to let you in again / you’re not alone in how you’ve been / everybody loses / we all got bruises.”
And no, the blue and white do not represent a university or pro team. They are, however, the school colors of Albert Leonard Middle School, in New Rochelle, New York, where I was privileged to spend almost 20 years as a Band Director with the greatest colleagues and greatest students under heaven. During this time all the ideas for U r kul. were born and nourished, and I will be forever grateful.
Thank you for reading! Hopefully you understand “U r kul.”
- Papa J
