Clark Middleton, the talented actor currently on NBC’s “The Blacklist” and Hulu’s “The Path,” is packing his bags and heading to Washington, DC, with hundreds of other Arthritis Foundation Advocates – to raise his voice and share his story at the Advocacy Summit.
Clark’s journey with juvenile rheumatoid arthritis (JRA) started as a young child, helping shape who he is today – and why he’s extremely passionate about patient rights and access to affordable health care for those with chronic diseases. Clark opened up about his lifelong journey with JRA.
In 1961, a doctor diagnosed 4-year-old Clark with JRA and told his dad that his son most likely wouldn’t survive another winter in the Kentucky climate. Refusing to risk Clark’s life, his father immediately uprooted the family from Kentucky for a warmer climate in Tucson, Arizona.
“I will never forget riding in that ’55 station wagon on our voyage to Arizona,” Clark says. “My joints were so swollen that my dad created a bed in the back for me to lay down. He would brake very slowly at the hundreds of stop lights along Route 66 to avoid any excess movement that would cause me pain.”
While the warmer weather helped Clark, a rheumatologist told him and his dad after a relapse to prepare for the inevitable. That Clark would soon end up in a wheelchair and be completely dependent on his father and others for the rest of his life. As they left the examining room his Dad said, “In no way are we listening to that!”
“My dad refused to let me quit and made me push through the pain. He believed in me,” Clark says. He recalls being hospitalized at one point and his Dad walked into the ward and said, “Time to get out of bed and do some walking. If you lay there and give in to the pain your joints will atrophy even further.” Later Clark overheard the overly sympathetic nurses say his dad was cruel because he’d made him push through the pain. The next day the doctor marched in and said, “I’m sending you home a week early. These nurses pity you! Only your father’s determination will give you the possibility of the life you deserve!” Clark insists it was his dad’s persistence and dedication that saved him.
However, Clark’s father knew that, even with persistence, life would be tough for Clark so he didn’t sugarcoat anything; he taught his son that the world is a safe place so you can take risks and go after what you want in life. He also taught Clark life can be difficult but if you truly want something persist, work very hard and be prepared to handle the ups and downs.
Over the last 25 years Clark has had 10 joint replacements; right knee twice, left knee, right hip three times, left hip twice, as well as a shoulder and elbow.
Clark’s defining moment into adulthood started with a call to his dad when he was living in California and 21 years old. “I called to tell him I had decided to become a professional actor,” Clark recalls. “I remember him pausing, and then saying, ‘Just keep your hands out of your pockets; when I was in high school, the drama teacher told me that I could never act because I always had my hands in my pockets.”
In 1982, Clark moved to New York City to study acting. By the mid 80s, he was a regular in off-Broadway shows and regional theater. His efforts began to pay off but his pain set in again … this time in his hips, which made walking to the subway an obstacle … and impossible later on.
After a number of years pursuing his passion and beginning to work professionally as an actor he began to experience the after-effects of having had JRA. Clark didn’t have health insurance and couldn’t afford the insurance premium for someone with a pre-existing condition. But he needed medical care-and fast-since his mobility and quality of life were quickly declining. “It’s a lot to digest physically and emotionally, especially in your 20s and 30s – without a steady income – and being dinged for having a pre-existing condition,” Clark says.
Clark met with a social worker to see if he was a candidate for Medicaid. To qualify, he needed to earn less than $1,000 a month as he remembers, so that wasn’t an option. “I was stuck. Too poor to pay for insurance, but too ‘wealthy’ for government assistance,” Clark says. “But I was lucky. My best friend helped me crack the system. He suggested that I quit my job for three months – earning no money – and apply for Medicaid. And to help, he would loan me money for three months to cover my expenses so I could recover from surgery.”
The plan worked – and Clark paid him back in installments for a year. But even though his health improved, he felt dehumanized and humiliated, and those feelings are never forgotten.
Quickly, Clark was on the hunt again, chasing his passion for acting. This is when he learned that having a positive attitude is essential.
Clark’s Outlook Today
Today, for the most part, Clark feels great. After a long day, or when it’s especially cold, he can feel it. However, his work ethic, stamina and passion is strong. “It’s a great time in my life,” he says.
“My job as an actor is to engage the audience by committing myself fully into the story and living honestly in that character’s shoes,” he says, “To connect with that person’s suffering and to bring nobility to them by finding creative ways to transcend that suffering. If I don’t connect in some way those imaginary circumstances between action and cut I’m not doing my job.”
Clark believes he defines how the world will see him by the way he frames his thinking and that he’s the one responsible for his own narrative.
“My wish for people with arthritis is that they not be defined by their disability, but to be empowered by it,” says Clark, “This is why I’m headed to Washington. My story is representative of many, many people. The deck is stacked against the 50 million Americans with disabilities. We need the support of our government and communities to help empower so we can contribute to society and impress upon the world that people, no matter their makeup or situation, make their mark by contributing to society in meaningful ways.”