This year, an incredible young man came into my life. While I have yet to meet him personally, I can confidently say he is an extremely accomplished and compassionate human being.
Peter Li is a spokesperson, author and inspirational speaker. He has written and produced an award-winning movie, attended the Emmys and published a book. He speaks publicly about changing anger and resentment into hope and possibility, and does it all from his wheelchair with no mobility and dependent on a ventilator to breathe.
At nine, Li was diagnosed with muscular dystrophy (MD), a genetic disease that causes progressive weakness and loss of muscle mass. His doctors estimated he’d live to his early 20s; today he is 41.
Li’s family fled Vietnam when he was six months. He now has four siblings including a younger brother, Jason, 39, who also has MD. His strength comes from his parents, especially his mother, who took care of both of them until Peter was 29 and Jason 26. They now live at Angel View residential care facility in Desert Hot Springs, which offers a home environment, full nursing staff and growth opportunities for those with disabilities.
“Angel View is my home away from home,” says Li. “They took away the burden that I had for 14 years; the burden of always asking my mom for assistance, and she doesn’t have to worry or take care of me which she did for so long.” It is that heavy burden he felt and could see in his mother’s eyes that spurred the idea for his book, Fueled by Misery (2017). The book took him 17 years to write with a laser-pointed mouse controlled by slight head movements, one click at a time.
“My mom inspired me because I couldn’t tell her how I felt about everything,” he says. “I didn’t want her to blame herself that I was born this way. I didn’t want to see that from her and I knew telling her wouldn’t change anything.”
So, he always put on a happy face and decided to write out his emotions. “I was mad and sad for a very long time, probably 14 years. In those years, life wasn’t fair to me. I was angry at why I was born like this and why I was even born at all. All I could do was watch people enjoying life, the laughter, the smiles, hanging out with friends, the school trips and especially people falling in love. I was envious of all that. I thought maybe I am just here to watch, and for other people to learn the words humble and humility. I never asked for this.”
He decided to turn all of his emotions and thoughts into a book in an effort to help others. “I wanted to help the mothers out there who have a child with MD. People with MD don’t openly tell their moms what they’re going through. I want those moms to get a glimpse of the emotions their child is feeling.”
Fueled by Misery offers readers an honest glimpse inside life with MD and, as his publisher describes, is not for the faint of heart. But it is also a story of hope as you see Li rise from the darkness and depression of the disease (which he says few ever speak about) to the life of light and inspiration he now enjoys. “It is my hope that the book will inspire people to embrace their lives and live it to the fullest,” he says.
Li attributes his motivation and many of his experiences to the caring team at Angel View. “If Angel View wasn’t around, I wouldn’t be here. They saved my life and I am very grateful.”
They also offered Li opportunities he would not have gotten elsewhere including the chance to be on a local TV talk show. “I took it! It took off from there and more and more opportunities opened up.” They support and encourage all his endeavors and donors made it possible for him to attend both the Emmys and the Palm Springs International Film Festival. His own movie, Weightless, debuted in 2014 at the Peacemaker Corps’ Peace in the Streets Global Film Festival and won a second-place honorable mention. The anti-bullying film has now appeared in over 40 countries.
This is why Li is so passionate to bring awareness to the organization which features him in billboards and other commercials. He also gives back through speaking engagements, which share a theme of fearlessness. “I believe that with all I’ve learned about MD and my many life experiences, I’ve become a teacher without knowing it. I like to speak to those who are curious and want to listen.”
What does he consider his greatest accomplishment so far? “My book, because of the journey. Writing out my emotions was very hard to do and I literally put my heart and soul into it. I had to relive all my past experiences – the tears, heartbreaks, sadness, depression; it took everything out of me.”
His other great accomplishment? Living to 41.
“Embrace the positives, negatives and hardships of life,” he says. “Learn to focus on things you can do, not the things you can’t do. Take every opportunity that comes your way and make them happen. No one is stopping you, but yourself. And don’t take anything for granted. There is always someone worse off than you.”
During these challenging times, he adds, “We have to balance out our fears. Accept them and appreciate them. If we don’t, we won’t live. Just face them head on; worrying won’t change anything.”
Peter Li’s book Fueled by Misery is available on www.Amazon.com. He can be reached at [email protected]