rolf's journey

Rolf Benirschke's Journey

Rolf Benirschke is co-founder, Chief Patient Officer and a part owner of Legacy Health Strategies, LLC. Legacy Health Strategies is a third party service provider contracted by B. Braun Medical Inc. Rolf was the San Diego Chargers placekicker for ten seasons, during which time he received numerous awards including The Walter Payton NFL Man of The Year. He is founder of the Grateful Patient Project and is an ostomate.

How do you play NFL football with an ostomy?

“With gratitude,” says award-winning NFL player Rolf Benirschke who began his journey as an ostomate 40 years ago and is now a devoted patient advocate. He has received thousands of letters written by patients and family members sharing their feelings of fear, loneliness, and uncertainty about ever returning to a normal life after having an ostomy.

Here on myosto-mylife.com, Rolf shares three powerful predictors of how successful a patient will be on his or her journey—attitude, support, and hope—and illustrates how important these factors were to his own journey.

“It has been nearly 40 years since I collapsed on the team plane flying home after playing a game against the New England Patriots. I was the placekicker for the San Diego Chargers and in my third NFL season.

Things had been going well when a year earlier I began to experience severe abdominal cramps, bloody diarrhea, and an abdomen so tender that I couldn’t button my jeans. I kept my illness to myself and continued to play. I thought, ‘Maybe it’s just a flu bug.’ Compared to my teammates who were dealing with concussions, torn knees and shoulders, my stomachache seemed insignificant.  What was lurking in the back of my mind, however, was the fear that it might be something more serious. 

And it was. My symptoms continued, and ultimately, I was diagnosed with Crohn’s disease—later determined to be ulcerative colitis. I was devastated. The timing could not have been worse. I’d had a pretty successful rookie season playing in my home town, and thought I might have a future in the NFL. Now, my thoughts began to change, and I wondered if I might lose my job and be forced to give up the NFL career just as it was getting started. You see, there is only one kicker on the team – no ‘backups’ as there are for other positions. So, you either ‘start’ or you’re unemployed.”

“The instant the plane touched down, I was met by my parents and taken to the hospital, where I would endure two emergency surgeries over the next six days and wake up with two ostomy appliances attached to my sides after the second surgery. 

For the next six weeks, I fought for my life in the intensive care unit, battling peritonitis and sepsis. I was too out of it most of the time to know what was happening, but my parents shared with me later that the doctors had come to them after the second operation and said there was a good chance I wouldn’t survive the night. I did survive, but awoke from that second operation in the recovery room 65 pounds below my playing weight and wearing two ostomy bags I could hardly bear to look at.

As I lay there staring up at the white ceiling tiles of the ICU, with an 18-inch incision and my abdomen held together with painful wire sutures that dug into my skin every time I took a breath, I wondered if life was really worth living. I had already fought so hard, endured so much pain and uncertainty, and now my body was nothing but skin and bones with two bags attached to my sides. From my perspective, I thought everything that was important to me had now been taken away. I couldn’t imagine ever playing the sports I loved again. Certainly returning to the NFL was out of the question, and a family…who would ever want to marry me looking like this?”

“After spending nearly two months in the hospital, I was released to the care of my parents. I was weak, angry, scared and depressed. I was 24 years old and had no idea what life held for me. From my point of view, it didn’t look like there was much to live for.

After moping around and feeling sorry for myself for a while, I finally realized it was up to me to figure out what to do next. Physically, I was so weak I had a hard time getting out of bed and even dressing myself was difficult. To help, my dad attached a rope to the end of my bed that allowed me to pull myself to a sitting position and gently slide my legs over the side of the bed.

Although things were difficult for me physically, emotionally, I was in a much more precarious situation. As I pondered my future, someone encouraged me to read some books written by former Vietnam POWs who had survived much more adversity than I could even imagine. In the books, the POWs shared some of the strategies they had developed to help them cope with their situation, and I decided to apply those same survival skills to my own life.

‘One day at a time’ became my mantra. I broke time down into small increments and then began to set small, measurable goals that would simply allow me to make it to the next day.”.

“As a professional athlete, I knew the importance of training and setting measurable goals. My first goal was ridiculously simple – to walk to our mailbox and back. Each day I would add another mailbox or two. Pretty soon I found myself walking to the end of the street and back. Friends and neighbors, driving by in their cars, would slow down to wave encouragement as they watched me shuffle along, hunched over in my baggy sweats.   

Another thing my study of the POWs taught me was how to ask for and accept help from the people around me. But much like the macho military guys I was reading about, I was a professional football player who had also been trained to be a ‘tough guy’ and never to show weakness. Our culture also reinforces the notion that we should ‘stand on our own two feet’ and “pull ourselves up by our bootstraps” and not complain. So asking for help was VERY hard for me. Looking back, I know I was able to get through that incredibly challenging time because of the overwhelming support of my family, friends, and teammates who ‘forced' themselves into my life and who wouldn’t give up on me. Along with a faith that was becoming real to me, I began to embrace and appreciate the importance of leaning on others. I now understand I never could have done it without their help and encouragement.

As I began to recover, I never imagined I could ever play football again – the thought was too ridiculous to even consider! Given the physical nature and sheer competitiveness of the sport, I began to think about other professions and resigned myself that my career in the NFL was over.”

“It was 1979, well before the Internet and a time when Inflammatory Bowel Disease (IBD) and ostomy surgery were very much a ‘closet’ illness. No one wanted to talk about what they were going through and patients were embarrassed to admit their diagnosis—let alone discuss the personal and intimate details of bathroom habits or what it was like to live with an ostomy. There was really no one my age I could talk to so I had to try to figure things out on my own.

Fortunately, my body began to recover relatively quickly and, because I was still under contract with the Chargers, I was able to work out with the conditioning coach at the team’s training facility and begin to regain my strength. Again, at that point there was no discussion of ever returning to football; it was just about getting healthy again. 

As I began to get stronger, regain my weight and became more comfortable with my bags and how they worked, things began to change. One day, the strength coach who had been with me every step of my recovery asked, ‘Do you think you might be able to kick a football?’ My immediate reaction was to start laughing since I had honestly never considered it. However, a few minutes later, we were out on the practice field, and I began drilling the ball through the uprights, just like I had before my illness…and the bags didn’t come off! I began to get excited about the possibilities.

Now the question became: would the team allow me the opportunity to compete for my job again? Buoyed by that recent kicking session, I requested a meeting with our owner and head coach and asked if they would give me permission to compete again for my job. 

Amazingly, a few months later, on September 7, 1980, I was back in uniform for our season opener against the Seattle Seahawks! I kicked two field goals and four extra points that day and helped us go to a 34-13 win! I almost couldn’t believe it, but I was healthy and back playing again in the NFL as a San Diego Charger, and would play seven more seasons. 

My illness changed everything and led me to do something that became much more important to me than being named NFL Man of the Year or my selection to the Pro Bowl. I became a passionate advocate for ostomy patients; committed to shining a light on the condition; encouraging patients along their journeys; and supporting the amazing WOC nurses who take care of us. It has been a privilege and a blessing and I am truly grateful.”