My days are seriously numbered in Boston (for now!) and I honestly feel very guilty about writing this post. So much is happening, and my time is a bit tight these days. Why guilty? I feel that if I’m typing anything right now, it should be about my manuscript. But, for now, I’m going ignore this feeling and endeavor to keep this short and sweet. I want to share about 1 of 5 recent happenings since the last post:
- Face Forward
- Not sleeping and lab meetings
- Psychiatry shadowing!
- A Trip to Newport
- White Belt!
The rest, I will cover in later blog posts so stay tuned!!
First, let me gush about Paul Newman. The reason why will soon become apparent.
Paul Newman was a beautiful man and a very fine actor. Seriously one of the greats! I first saw him in Somebody Up There Likes Me (1956) when I was in middle school. It’s a fantastic film where he plays a washed out boxer, Rocky Graziano. Rocky starts at the bottom and gets to the top. Sound familiar? Sylvester Stallone definitely watched this film before his own boxing films and it’s outstanding!
He’s brooding and angsty across from Elizabeth Taylor in the sizzling Cat on a Hot Tin Roof (1958). I think it’s Taylor’s best film. Dazzling chemistry between these leads, the intrigue, and dialogue is as engaging as one would expect a Tennessee Williams play to be. (WHICH IS VERY)
And of course, we cannot forget his collaboration with Robert Redford in Butch Cassidy & The Sundance Kid (1969) as two outlaws as well as the Sting taking on Chicago gangsters (1973; also got 7 Academy Awards)! Raindrops Keep Falling on My Head (SERIOUSLY WATCH CLIP BELOW)!
I could go on and on about Newman, but if you aren’t a movie buff like me and/or were born after 1989, you probably only know him from the grocery store. Ever heard of “Newman’s Own” Lemonade or Salad dressing? Yeah, it’s the same guy.
Paul Newman, as much of an icon as he was, gave away much more money than he made. He was a true philanthropist (along with his wife Joanne Woodward, also a fine actress) and started this company along with other initiatives. “Hole-In-The-Wall” Camps were also a Newman initiative. There are summer camps for children with genetic diseases/serious illnesses that are medically supervised. About two weeks ago, I was a volunteer at a “Campfrence” for a program called Next Step (a hole in the wall camp). This particular cohort is called “Face Forward” and is for young adults (late teens-early 20s) who have genetic diseases like sickle cell disease, Ehlers Danlos Syndrome, Friedrich’s Ataxia, muscular dystrophy and more. Adulting is hard! But imagine trying to do it while facing a serious medical condition! The goal of this program is to help young adults “adult well” and Face Forward, coming to terms with their illness. This age group is so near and dear to my heart. I’m considering a joint medicine-pediatrics residency program because the transition of young folks with serious illness to adulthood can be so tricky, and I think intervening is powerful!
I heard about Next Step from Dr. Matthew Heeney, the director of the pediatric sickle cell clinic at Boston Children’s Hospital. I spent a morning shadowing him and had the chance to meet one of his patients who attends the camp. I was so touched by how much she loved the experience. And, for a 19/20 year old to love going to CAMP it must be pretty darn cool. As if he read my mind, Dr. Heeney reached out to the Next Step directors and put in a word for me to be a volunteer. Thankfully, they had the space for me to participate at the 4-day Campfrence.
I went into the camp hoping to make an impact, but quickly realized that I was at about 50% my normal energy capacity. It was a rough week leading up to the 4 day camp. I had a meeting with my PI, was throwing together my figures and wound up getting about 90 minutes of sleep before the first day of the camp. Throughout the weekend, I did not sleep well, and I did not feel like I brought my best self.
But you know what? It did not matter. These young people had more than enough wisdom and insight to impart such wonderful support to each other, and I felt so lucky to witness that. The most powerful aspect of the camp is the subtle group therapy happening through the music therapists. They were superb. Music is such a wonderful medium to receive healing. A young man was too shy to introduce himself to the group in the beginning, but by the end of the Campfrence, was performing for everyone on the saxophone. The transformation was amazing.
I spent the night at home the first day of the camp because I had a meeting with my PI the following morning. Lucky for me, I had a chance to get a ride home with the founder and executive director of Next Step, Bill Kubicek! He actually KNEW Paul Newman and told me the story of how he pitched this idea to Newman, the vision of the program, and some really cool stories about Paul that only a person who knew him could tell! It’s amazing to think I now have 1 degree of separation from him! WOW.
A quick story: Many of the kids at the Hole-In-The-Wall camps over the years thought Paul Newman was just some older man who took out the garbage. They had no idea who he was. One day, a young boy noticed Newman’s face on the food package he was eating. He slowly looked from the package to Newman–back and forth until he couldn’t take it anymore and said:
“Are you lost?”
To which Newman laughed and said, “No. I’m not lost.”
Sometimes, I really do wonder if I’m lost, but with all of life’s ups and downs, I feel so blessed when I strongly feel that I am in the right place. I was anxious about committing to the camp knowing how rough my week would be, but boy am I glad I did it. The young people at this camp had much more to offer me than I them.
We Face Forward because even when life deals us a difficult diagnosis, bad news, or heartbreaking relationship, we have the power to decide how we will live our lives. We can control how we respond. The tenacity and positivity of these young people filled me with so much hope.
We Face Forward because looking ahead is the first step of moving forward.
We Face Forward not because the past and it’s hardships are trivial, but because that is the best way to live with empowered joy.
We Face Forward because strength can be found in disappointment.
Strive is a sickle cell-specific umbrella program of Next Step. When I was in college at University of Chicago, I desperately wanted to be a part of Strive, and I was well-suited for it! But, in some bizarre event, I did not get the position and I was so heart-broken. When I told Bill about this, he was shocked, and jokingly said he would do an internal investigation to discover what happened. Even though I was disappointed about 6 years ago when this happened, I used the difficulty to fuel my own creation of the Sickle Cell Buddy Program in Cleveland. And, life is so funny that I got to interface with the person who developed these programs in the first place.
I could have stopped engaging in these outreach programs, but I put that disappointment away and looked to the future.
And when I heard these young people talking about their repeated hospitalizations or difficulties with school or making friends, I was so touched about the tangible hope they still had. I instantly was reminded about how spoiled I am to receive most of what I have wanted. I need to be grateful for what I have.
Their positive attitudes transferred to me, and I feel so much less anxious for the next step of my life as a third year medical student.
What a gift! I sincerely hope I can participate in this initiative in the not so distant future.