By Rosa Walston Latimer
What would you do if, after five unsuccessful knee replacements, you face the realization that amputation of your leg might be the final solution? If you are Jason Lilley, a 42-year-old Honorably Discharged Marine and decorated combat veteran, you embrace the possibility with optimism.
“Of course, the decision to have my leg amputated above the knee didn’t come easy,” Lilley said. “I had been through so many surgeries, I was ready to take this drastic step, but I took some time to discuss the possibility with others.” Lilley’s experience with knee surgeries began during his senior year in high school when he tore cartilage in his knee and underwent surgery from which he healed.
“Through the past 20 years, insidious pain has been ever present,” Lilley said. “When I stood up, it was inevitable that I was going to hurt. Now, to be free of that pain it is as though a heavy fog has been cleared from my brain. It is super refreshing to get up in the morning and begin my day without dealing with intravenous antibiotics.”
Never allowing the many physical setbacks he experienced to limit him, Lilley has led a very productive, fulfilling life. “After I graduated from high school I went to college for a couple of years. Then, I moved to Milan, Italy, and worked in an American restaurant for two years,” Jason said. “When I came back to the United States, I intended to go back to college but decided to do something that would give me more direction.” In what seems to be typical “Jason style,” he chose the Marines, because he felt it was the most demanding military branch.
After a medical separation from the Marines in 2007, Lilley went back to school and earned a Bachelor of Science degree in Professional Aeronautics from Embry Riddle Aeronautical University. Later, Lilley earned a masters degree in Organizational Leadership. He has plans to pursue a doctorate with the hopes of someday leading a corporation. “More education will depend on what my next work situation is,” Lilley said. “I’ve been on medical leave from my most recent employer, and they are trying to find a place for me to return. If that works out, I’d be happy as it is a great company, and they have been very tolerant of my situation. But I’ll understand if there isn’t a place for me, and I’m beginning to look for other possibilities, so I’ll be prepared regardless of what happens.”
Lilley’s stint with the Marine Corp deeply affected his life and helped prepare him for crucial decisions that would come. “In 2002, soon after I was stationed with my unit in California, I met Michelle, who would become my wife.” Lilley said. “My unit was scheduled to go to Okinawa, Japan. Instead, we were sent to start the invasion of the war in Iraq.” At age 22, soon after his marriage, Lilley went to war and spent most of his time as a door gunner on a Huey helicopter. “We always trained for the fight and readiness for that event was our focus, but now I was facing the real thing. As much as you can practice, it is a different story when you see bullets and RPGs [rocket-propelled grenades] coming at you.”
After six months in Iraq, Lilley returned home for a few weeks and then spent six months in Japan. “Our first year of marriage was mostly random phone calls and emails,” Lilley said. “When I came home, I struggled. I did not experience PTSD, but I had become accustomed to the intense pace of war and always being on high alert. The pace of my life dropped 50%, and still, I continued to overanalyze and overthink because that is the thought process when you are flying a mission.” Ignoring the stigma that was prevalent in the military, Lilley sought help. “I went through a significant amount of counseling to adjust,” Lilley said. “Michelle and I went to counseling together and had to get reacquainted because, in a sense, I wasn’t the same person she married. Mentally I became stronger and adjusted into life without firepower. I was happy in my marriage. Within a couple of years, we had a son and a daughter. I had everything that I had been looking for when I joined the Marine Corps. Lilley used his experience to encourage other Marines to seek counseling. “I continue to attend counseling regularly and am confident it helps me deal with whatever comes my way.”
“My resilience comes mostly from my time in the Marines. Our motto is, Semper Fidelis – always faithful. Don’t give up,” Lilley said. “Military service also gave me more confidence and taught me leadership skills such as how to communicate effectively.” That resiliency brought him through 29 surgeries; most were on his knee, and others were on his ankle, both shoulders, and an elbow. “I wanted the amputation after my third knee replacement failed, but the doctors said ‘no.’ They believed there were still things they could do without removing my leg. I had two more failed knee replacements and I said, ‘I’m done!’ I started discussing the possibility with Michelle, another doctor and other amputees.” Michelle wasn’t initially as comfortable with the decision to amputate as Lilley was. “She was seeing it from a different perspective, but she supported my decision.”
“Jason’s decision to amputate his leg was, as you can imagine, very difficult for me,” she said. “I couldn’t see how this was going to be a good thing. But Jason felt so strongly about it and comfortable with the outcome that I was certain I could trust his decision. I knew he wouldn’t do anything that wasn’t good for all five of us as a family.”
“I’ve always known that Jason was mentally strong,” she said. “More than anyone I’ve encountered; he has the ability to put mind over matter. So many times, we would go to another doctor’s appointment and there would be something else wrong. Still, there he was, smiling and going forward with hope. He was enduring a great deal of pain, but there was very little, if any, complaining from him.”
As difficult as it was to choose amputation over another knee replacement, for her the toughest moment was when she first saw him after the surgery. “There was no way to prepare for the results because you don’t expect someone you love to lose a leg. Preparing for the surgery was hard and sitting in the hospital waiting was hard. Because of the pandemic, I was alone. But, when they wheeled him into the room and I saw the outline of just one leg under the sheet, that was by far the hardest time for me. I did not even look straight at Jason for a little bit because I had to keep myself together. Nothing could prepare me for that moment, but I got through it. We got through it.”
The couple is emphatic about how helpful, and supportive friends and family have been throughout the hard times. “The help of my parents, Michelle’s parents and her sisters were awesome,” Lilley said. “When Michelle had to go back to work after my last surgery, members of her family, with no hesitation, came from California and stayed a week at a time to help during my recovery,” Lilley said. Michelle also expressed a great appreciation for the help of her family and, in particular, Lilley’s mother, Ann. “The day before one of Lilley’s serious surgeries, I got sick with the flu. I was in bed with a fever and could not do anything. Ann took over and made sure everything was taken care of,” Michelle said. “There were many friends who helped in so many ways. Three friends – Melissa, Rainnie and Tori – step in just when we need them the most. They have coordinated meals for us, collected gift cards to help when we were in Dallas for surgeries, and there are times when they just get me out of the house for a break.”
Ultimately, the couple found their greatest strength in each other. “Michelle is my strongest support,” Lilley said. “Having her beside me is a major part of my successful recovery. She is a quiet fighter with an internal strength unmatched by anyone I’ve met.” She depends on Jason’s resiliency and positive attitude to help her through tough times. “I don’t know how he has stayed so positive when we kept getting negative news,” she said. “Of course, we had our bad days, separately and as a couple, but with Jason it always comes back to mind over matter. He focuses on the positives.”
The Lilleys are mindful of how these difficult years might affect their children. “I hope our kids have gained strength from all we’ve been through,” he said. “I believe they realize that even though times get tough, we don’t give up. My story is unique, and I am smiling. Does that mean everything is OK? No, but I am better than I was. By our example, I believe they have learned they can get through challenging times and come out on the other side even stronger.”
Now that Lilley is using his prosthetic efficiently and the couple is looking ahead, they see some things a little differently. “The first thing I want is a boring, normal life,” Michelle said. “I want to be ‘just’ the Lilley family again, not the Lilley family and their situation. I look forward to weekends with nothing to do.” She was not surprised that Lilley’s goals were very different.
“For so long, infections have ravaged my body, and I have been on so many antibiotics; once I am healthy again, I want to get back into the gym. One of my goals is to finish a Half Ironman. I want to be more active with my kids and play football in the street.” The Lilleys have three children: Austin, 15; Mackenzie, 14; and Madison, 10. “We love to travel and enjoy camping, going to the lake – anything we can do outdoors together.
Just as the couple has navigated successfully together through 18 years of marriage, their commitment to each other will continue to see them through. “He’s told me all kinds of things that he wants to do, and I look forward to seeing him do it all,” she said. “His sense of humor is what first attracted me, and I appreciate his enthusiasm. It is exciting to think about planning a vacation without considering his limitations. We can just do what we want to do. It is amazing that there is a light at the end of this long, dark tunnel. It is not really a light. It is a sunburst popping out confetti!”
“The decision to cut my leg off gave me more control over my future,” Lilley said. “The mental fog that comes from enduring constant pain is lifting away. We have lived with all of this for a long time and now we are near the end. I am close to going back to work. I am walking confidently with the prosthetic and regaining my strength. I am driving and getting out more. Losing my leg created a difficult situation that requires adjustments in my life and the life of my family, but that’s not going to stop us from enjoying life.”
Jason may be reached at firstname.lastname@example.org
Jason Lilley is an amputee who lives in Lubbock, Texas.