I traveled last weekend to Kansas City Missouri, to attend the annual gathering of the Arthritis Foundation. I have to admit I’ve been feeling a little sorry for myself lately, and a little bit afraid for what my future holds. After all, this past year I have experienced the death of my youngest brother, who had been living with the effects of Rheumatoid Arthritis for over twenty years. I was also diagnosed with RA nine months ago, and had to retire early from my full time job because of it. One of the things my brother had told me before he died is that “no one understands it”, meaning no one understands what he had to live with on a daily basis.
As I traveled to the gathering, I had mixed emotions. I was thinking of my brother and the many conversations we had over the years about his health. I was also thinking about my own symptoms. I get tired very easily these days and I was wondering if I could last through the entire four days. This was the first time traveling alone since my diagnosis. It was also the first time I was attending a conference, identified as someone with an autoimmune disease, a classification of diseases that runs in my family and, in its various forms, has taken the life of several of them. I wasn’t sure what to expect.
What I experienced was truly amazing. I met people from all over the country who have experienced living with an autoimmune disease a lot longer than I have. Many had suffered from Juvenile Arthritis as children, resulting in stunted growth, deformed limbs, and a childhood of medication, operations and pain; in many respects having no childhood to speak of.
Think about your own experience growing up; your awareness of body image. The mental obstacles you had to work through, especially in adolescence. Now add to that the humiliation, as other children made fun of you, ridiculed you, or ignored you.
I met a man who, although younger than I, looked to be much older. He told me about his life. He talked about growing up with an alcoholic, unsupportive father. He was so self conscious of his physical appearance that he isolated himself from others. He spoke about the difficulties he’s had dating and struggles with social anxiety to this day.
Another woman I met looked to be around my age. She walks with two canes. Among other things, she has had numerous operations over the years to replace worn out joints. She has also experienced the mental anguish of marriage to men who have various addictions and the heartbreak that comes with the mental and physical anguish of her situation. She also had to retire early because of her health.
At one session we listened to actor, Clark Middleton, talk about his childhood. You see he was diagnosed with Juvenile Arthritis. His story was quite different however. He spoke of a father who believed in him and who supported him in any way he could. Verbally praising him every chance he could. At one point he even moved the family to a climate that was healthier for his son. Taking care of him physically, bathing him, and helping him with physical therapy, bending his limbs and stretching his muscles. Supporting him through the many surgeries he needed, making sure Clark knew, as he said, my father always had my back. There was nothing his father wouldn’t do to encourage his son’s progress. When he decided to be an actor, his dad encouraged him. Imagine, having stunted growth, fused joints, growing up experiencing both physical and emotional pain, and he tells his family he is going to be an actor. As if overcoming his physical challenges weren’t enough, he decided to take the risk. With the love and support of his dad, he went off to New York and then Hollywood. According to his press release:
Clark Middleton can currently be seen in a number of diverse roles on television: On NBC’s hit THE BLACKLIST, Clark plays DMV boss Glen Carter, irascible agitator to James Spader’s straight man, Red. In THE PATH (on Hulu) Clark plays the Meyerist cult’s troubled auditor, Richard, who struggles to help members come to terms with their founder’s passing. He plays LOUIS CK’s caustic super; and will be seen as a character too mysterious to discuss, in David Lynch’s new TWIN PEAKS, on Showtime next year. He is also well known for his work on the FRINGE and LAW & ORDER.
Clark’s many turns on the big screen include Alejandro Iñárritu’s Academy Award winning BIRDMAN, Bong Joon Ho’s SNOWPIERCER, Ang Lee’s TAKING WOODSTOCK, Robert Rodriguez’ SIN CITY, and Quentin Tarantino’s KILL BILL 2. Clark has extensive experience on stage as well and in the last 30 years has performed in many of the major theaters in NYC and across the US, creating roles for such writers as Sam Shepard, John Guare, David Ives, John Belluso, Lanford Wilson, and Jason Katims among others.
Clark also writes and directs. His solo show, MIRACLE MILE, critically acclaimed by the NY Times, was based on his life long journey with rheumatoid arthritis. He has directed about 20 plays in NY and regionally. With their production company, Apt 929, Clark and his wife Elissa have made several short films. 929’s first feature, SIMON SAID, which Clark will write, direct and star in, is currently in development.
The advantage Mr. Middleton had over many who were in attendance, was the unstoppable love and support of an earthly father, who believed his son could grow up and do whatever he chose for his life. The actor had to stop and collect himself a few times while speaking of his dad, who passed away not too long ago. He also hinted at having a strong belief in a God who he described as a “Heavenly Father”, who also believes his children can grow up to be whatever they chose for their lives.
Throughout the weekend, I met a lot of happy, confident people who have learned to live with their situation no matter what obstacles they have had to overcome. These are people who have had to carry on against all odds including future unknown health issues as the disease progresses.
I kept thinking about my brother, remembering his words that “nobody understands” and cried a little for him as I left the conference. I was thinking he had missed an opportunity to be around a couple hundred people who do truly understand what he was going through. I felt sad that he felt so isolated and alone in his suffering, when it really didn’t have to be. I also felt encouraged however, that I have a choice. I can choose to continue feeling sorry for myself, isolating from the world. I think it would be easy for me to do. After all, I have spent my entire career in the human services field and in ministry. Who would blame me for sitting back and not participating; or, I have another choice. I can choose to engage in the world, getting support and supporting others. Helping myself and those experiencing the challenges we face together. You see, I can’t honestly say, no one understands. I know the truth, and as they say – “The truth will set you free”.