Ed Ferris on Dealing With Pain
Ed Ferris started the Bubbles Project to honor his daughter and help children battling chronic pain.
Ed Ferris ’88 and his wife once believed they’d never have children. Monica Phillips-Ferris ’89 had endured colon cancer at 24, which made childbearing unlikely. In 1995, the couple found out they were expecting a baby. Madeline arrived that year, and Edward Jr. followed in 2000.
The good times lasted several years for the San Antonio-based Ferris family. Ed Ferris, a Neeley School of Business marketing alumnus who had been a cheerleader at TCU, is now vice president for Jani-King, a chain of janitorial and disinfecting services, where he helps people start and develop their own businesses.
But hundreds of hospital visits awaited on the horizon. Diagnosed with colon cancer at 42, Ferris underwent surgery to remove two large tumors. In 2012, Monica Phillips-Ferris had surgery for a brain tumor.
The next year, the Ferris family set sail on a Christmas cruise to celebrate new beginnings. The children returned to school in time for flu season, and Madeline got sick. She tested negative for flu but never seemed to improve.
Madeline, who once broke her hand in the middle of a softball game but finished playing regardless, faced headaches that would leave her crying and immobile.
Doctors suggested seven chronic illnesses, ranging from polycystic ovary syndrome and digestive disease to multiple sclerosis. One doctor put her in a coma for several days. A surgeon spent 10 hours detaching and removing nerves from her head.
In her blog, (In) Sane in Chronic Pain, she wrote about losing normalcy, being tethered to medication schedules and enjoying James Arthur’s new album.
Madeline visited more than 250 physicians in five states starting in 2013. Four years later she slipped into a catatonic state in the bathtub and drowned at age 21.
Not wanting his daughter’s mission of uniting children with chronic pain to go unfulfilled, Ed Ferris developed an idea that would become the Bubbles Project. Named for his daughter’s softball moniker and personality, the nonprofit provides resources for families with a child facing chronic pain. Ferris said he is working toward purchasing land that will become a retreat for the Bubbles Project families to take a break or mourn the loss of a child.
Writing through his grief, Ferris published A Father’s Heart: Love, Life, Loss and How the Heart Goes On (Hope Kelley Book Publishing, 2020).
He shared life lessons he has picked up through the years.
Solve the problem. Don’t spend too much time looking back on what got you there or projecting too far forward in trying to design the future. Deal with what is in front of you and make the best decision you can at the time. The great thing about making a decision and acting on that decision is that if you are right, you move the process forward in a positive manner. If the decision turns out to be less than optimal, you get to make another one — a better one — armed with the experience from the previous.
Keep a short memory. If someone has done you wrong, or if you have made a mistake, don’t carry it with you. Learn from it, make the correction and move forward. If you have had a success, learn from it and improve on it the next time; don’t dwell on it and expect it to define you going forward. You must win each day based on what you do with it.
Share your story. We all have a story to tell that can help someone else. Sometimes they are stories of success, and sometimes they are stories of failure or hardship, but your story can help others. Before I wrote my book, I thought it was just my story. After publishing it, I was amazed by the feedback from fathers, mothers and kids on how parts of our story spoke so directly to them and impacted their lives. The American Academy of Pediatrics reports that 10 to 20 million children and adolescents in the U.S. have some form of chronic illness or disability. The CDC found that one in 15 children have multiple chronic conditions like Madi.
Own your challenges. Everyone has challenges. Don’t look outside yourself and think, “If only …” We never know 100 percent of what others are going through, and when we do find out, most of the time we realize that we would choose our troubles over those of our peers.
Find small victories and celebrate them. Even in the darkest and hardest of times, there are small victories. Recognize those; celebrate them and build on them. Those victories will become the foundation on which you will build your future.
Give with gratitude. Be thankful for what you have, warts and all, and give of your heart and yourself with the knowledge that giving to others is the most fulfilling feeling that exists.
Find a way to say yes. Many of us protect our time and ourselves by saying no. Changing that dynamic and finding a way to say yes in a way that may not be exactly the way it was anticipated, but in a way where both the questioner and questioned are satisfied, can open new opportunities and lead to experiences that would otherwise be lost.
Sometimes no words are necessary.
Reflect, don’t regret. The loss of a child is one of the most painful experiences a parent can go through. So much went into Madi’s situation that it would be both easy and paralyzing to look back, dissect each decision and each action, and allow regret to consume us. I absolutely HATE that Madi is no longer on this earth with us. But we have chosen to reflect rather than regret. Reflection allowed me to cherish and honor the gift that God gave me in my daughter, to escape from the negativity, to truly celebrate her life by sharing our story and to realize our story wasn’t as special as our relationship.
Know everyone’s job, but do yours.
Be willing to be different.
Focus on what you can do, not what you can’t.
Focus on the quality of your communication, not the quantity. Verify understanding by asking, “Does that make sense?” Confirm agreement: “Is that something you can see yourself doing?” If you start a comment with “I thought …” realize that the previous communications likely were not of a high enough quality.
Edited for clarity and length.
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