How A 17 Year Old Can Teach Us All How To Live Despite The Presence of Illness and Pain

sambernsIf you’ve never heard of Sam Berns, you’ve missed an amazing young man. Sam was one of the most inspirational role models for children and adults suffering with a challenging medical condition, in his case progeria. He was bright, vivacious, and keenly intuitive about finding happiness even while living with pain and under the specter of a terminal illness. Sam passed a few days ago at the age of 17 and his life and message deserves to be celebrated.

Progeria is an extremely rare disease that causes children to age 8 to ten times faster than normal. By their eighth year, children’s bodies will have aged the equivalent of 64 to 80 years and few live past the age of 13. Sam, though, did not allow progeria to dominate his thoughts. As he said numerous times, “I have a great life.”

Sam appeared as a guest lecturer at the TEDxMidAltantic 2013 conference and his video, “My Philosophy for a Happy Life” quickly became viral. I found his speech remarkably profound for such a young man. His strength, determination, courage and honesty inspired millions because he refused to let progeria limit his life and self-esteem. I hope that you can see a little of yourself in Sam and, perhaps, learn a little from his attitude and determination as you cope with interstitial cystitis, prostatitis and/or pelvic pain.

Sam’s three principles for living:

1. Be OK with what you ultimately can’t do, because there is so much that you can do.

Sam shared “Even though I have progeria, most of my time is spent thinking about things that have nothing to do with it. I don’t ignore the negative aspects. I know what I’m missing out on, but I choose to focus on the things that I can do.” In his case, it was following his favorite Boston sports teams, enjoying comic books and music. He was a self described “band geek” who performed in his schools marching band. He didn’t allow himself to agonize and dwell over the things that he couldn’t do. He focused on things that he could and loved to do!

2. Surround yourself with people that you want to be around.

Sam said “I feel like I’m at my highest point when I’m with the people who surround me every day.” For him, this was family members who gave him love, unconditional support and the encouragement to pursue his dreams. He shared that his good friends didn’t judge him by his appearance, “We see each other for who we are on the inside.” He says that you should surround yourself with people who make YOU feel good about yourself.

For those IC patients who have supportive family members and friends, you are blessed. For those of you struggle for support, Sam’s message is powerful. Spend as much time as you can, as he said, with “people of high quality” who make you feel good about yourself. Limit your time with those who bring down.

3. Keep moving forward.

One of Sam’s favorite people was Walt Disney who inspired his third principle. Disney was quoted as saying “Around here, we don’t look backwards for very long. We keep moving forward, opening up new doors and doing new things.” Sam applied that to his daily life and said “I always try to have something to look forward to” whether it be a new comic book, going to a football game or going on a family vacation, “All these things keep me focused on a bright future ahead and that helps me get through the difficult moments.”

And this is where Sam was at his most wise. He understood that dwelling in negative thoughts, something IC patients are very familiar with, was dangerous. Reminiscent of Norman Vincent Peale, he shared “I try not to waste energy feeling badly for myself. When I do, I get stuck in a paradox where there is no room for any happiness or any other emotion. It’s not that I ignore it. I let it in, acknowledge it and then do what I can do to get past it.”

Being a “forward thinker” was important to Sam. Not only did he look forward to doing things, but he was happiest when he (and his family) tried to be a force of change. Sam spoke about progeria frequently and was the the subject of an HBO documentary called “Life According to Sam” which followed his life and his parents research foundation for three years. He also had dreams. He first wanted to be an engineer but his interests turned to biology and medicine. He said “I feel that no matter what I become, I believe that I can change world and as I strive to do this, I will be happy.”


When you watch the video, and I sincerely hope that you do, I hope that you are struck, as I was, by Sam’s innate survival skills. He reminds us all that as family, our job is to support, encourage and nurture those in our daily lives, especially those who are suffering. That with this love, and despite great pain, joy can be had. Suffering can be eased. Dreams can be made and fulfilled.

But, this is not just a story about the love Sam experienced, it’s also a story about Sam’s mental discipline and determination to fight depression. He realized that if you dwell in the darkness of fear, sorrow and pain, there isn’t much room for happiness.

Sam also realized that you have to have good friends in your life, people who lift, nourish and support you. Ironically, this makes me think about all of the stress and hurt feelings being generated in the various Facebook IC support groups. Support groups should lift your spirits, not make you feel bad about yourself.

Living with progeria, cancer, interstitial cystitis or any painful condition isn’t easy. No one should dare to say otherwise. But what Sam proves is that no illness can silence our spirit. It will test us. It will make us grow. It will, I hope, inspire us to create a home where healing and joy and love are felt every single day.