Ornah Levy and Her Passion for Life

February 01,2021

A Word from our President, Dr. Patricia George

I found out on Friday that my dear friend, Ornah, passed away. So I wanted to share the story of our friendship, and share with you some of the amazing things I have learned from her over the past 6 years.

Many charities that utilize athletics and athletes as fundraisers use taglines and catch phrases like “Racing for a cure for ____” or “Running for ____.” But one of the mantras we have worked to embrace on Team PHenomenal Hope is that of “Racing with” a person who lives with pulmonary hypertension. In our Let Me Be Your Lungs program, we partner each athlete with a person who has. Most people who live with pulmonary hypertension (PH)  —  a chronic and progressive disease with medical treatments, but still no cure  —  cannot really think of physically running, cycling, or doing any sort of endurance/ultra-endurance event because of the disease itself. So we partner patients with athletes in our Let Me Be Your Lungs program, and as a team they race together to make a difference.

Since the inception of this program (and in fact, since the beginning of Team PHenomenal Hope) I have been fortunate to race with an extremely special individual, Ornah Levy. I first met Ornah when Team PHenomenal Hope was just beginning. In Spring 2014, before the Race Across America (RAAM), I spoke at the Long Beach Pulmonary Hypertension Support Group, and met a lot of amazing people including Ornah and her husband Jonathan. When our 4-woman team raced across the USA in RAAM 2014, we literally raced with the PH community in “The Race of our Lives.” Ornah and Jonathan helped make it possible for a road trip to happen with Pulmonary Hypertension Association (PHA) conference attendees meeting us in a parking lot outside of Indianapolis, the site of PHA Conference was that year for a racer/crew transition (I will never forget that night) and also got us connected via the internet with our PHriends at PHA conference so that we all could cross the finish line together (us in Annapolis and the conference attendees in a bar in the hotel at conference), truly making the race an experience shared by all. The next year my teammate Anne-Marie and I raced in the Race Across the West, and as we suffered in the heat of the desert, again Ornah was by our side. She and Jonathan literally joined us and met us at places along the way for the course, helping us keep going, as keeping us grounded in the purpose of our race. After that event, Ornah and I became Let Me Be Your Lungs partners, and I have been racing with Ornah ever since then.

In the time I have been racing with Ornah Levy, she taught me so much by how she lived her life.

First, one of the most impressive qualities of Ornah was the amazing power of her beautiful personality. Ornah always filled up any space with her boundless love and energy. You could literally feel it. She embodied kindness and compassion and a generosity of always seeing the beauty and goodness in those around her. She could believe in another person when they sometimes struggled believing in themselves. And let me just say, when she was supporting you, her encouragement could carry you literally across the state of Florida (talking with me via cell phone during RAAM Challenge in 2014) or Nevada (being there in the middle of the night during Silver State 508 in 2017), or help you working on realizing a dream in building a grass roots nonprofit to help the lives of others. She was an individual you always wanted in your “crew van’’ in life.

Second, Ornah possessed a joy for life that was expansive. Although she lived with pulmonary hypertension, requiring IV Remodulin (a continuous 24/7 medicine that she had to prepare and manage through a pump she carried with her) she did not let the diagnosis stop her. In addition to joining us on our crazy adventures, she loved Disneyland, her “happiest place on Earth,” and traveled to Alaska vacationing in an RV with Jonathan! In 2020, she joined the faculty at Chapman University as a lecturer at the Dale E. Fowler School of Law, bringing her experience as a lawyer and mediator to teach law students about contract law. She relished making this course really mean something for her students, and also brought in guest speakers to her class to give her students different perspectives as they were looking ahead and planning their own career paths. She loved teaching and even during these past several months while she was in the ICU at UCLA, she still taught her course via Zoom. One of the moments I remember most was her saying to me not that she “had to” teach or grade papers (while in the ICU), but that she “gets to” teach. Those words at that time, not only epitomized how she viewed life, with her attitude of carpe diem, but they really resonated with me. She made sure — even when spending months in the ICU with low blood pressure — to see her glass as half full. She would cherish cards, visits from family and friends (prior to the COVID-19 lockdown), and kind gestures (a little generous with the ice chips, a wonderful neck massage) from nurses. It isn’t that she didn’t acknowledge the challenges before her with her health, it’s that she chose gratitude and to see the beauty in each day, no matter where she was.

Third, Ornah was an advocate for so many people, and especially for those living with PH. She spoke at PHA conference sessions, helping other “PH’ers,” as she would say, with tips on how to travel (I learned a lot from that session, by the way). She helped organize with her support group, and she hosted PHriends 4 Life events with a walk and a concert in the park for the past 2 years, to both “PH’ers” and also the community, raising awareness about PH as well as funds for research. She was extremely dedicated to making a difference, whether raising funds to support research or teaching. She helped teach young doctors-in-training, enjoying the opportunity to share her PH diagnosis story and experience with the “doclings” as she called them, so that others after her would not go misdiagnosed. Through her service in the PH community, I am certain that Ornah Levy helped save lives.

I am going to truly miss Ornah, her joy for life, her kindness and boundless love for those around her, her belief in others (even when we sometimes doubt ourselves), her advocacy, and her embrace of the expression “carpe diem.” What are those things we “get to” rather than “have to” do today? May we honor her life by diving in to whatever it may be with all the gratitude, energy and love of life we can embrace and seize the day. Let us get into “the crew van” for others, especially during these tumultuous days, and extend bold and generous kindness to one another. In so doing we will allow her spirit and legacy to live on.

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