About Me

My name is Jon Monk. I am forty-three years old and live with the most severe for of Sickle Cell Disease. After I was born and released from the hospital, I came to live with a loving Caucasian foster family that, in time would adopt me. Their ethnicity is important only because, when they voiced their desire to adopt me—being the early 70’s in the State of Michigan—interracial adoption was severely frowned upon. I was diagnosed with Sickle Cell Disease in its most severe form at the age of two.

After nearly two years of fighting the system, this diagnosis was in truth the catalyst that allowed the only family I had ever known, to adopt me. Because being diagnosed with Sickle Cell is what permitted my family to adopt me, I've always looked on my illness as a somewhat positive thing in my life. Without it, I wouldn't have the family I do.

Sickle Cell Anemia, like all patients, is a condition that literally affects every aspect of my life. From ages nine to nineteen I had been hospitalized over 100 times, and wrestled with complications that included: a massive cerebral hemorrhage; monthly blood transfusions; kidney problems; gall bladder removal; chronic pain; an absence rate of fifty percent from grade school; and a constant tickle in my funny bone.

Though I did pursue a higher education after high school and received an AA in psychology, furthering my schooling proved extremely difficult. Flare-ups of my condition slowed my academic endeavors to a snail’s pace. Though I have worked on occasion, for the most part, my health hasn't made employment possible for me.

As an adult I’ve learned to manage my illness more effectively than when I was younger. Though hospitalizations have been less frequent in adulthood, complications still routinely arise. I live with daily chronic pain, low hemoglobin levels, have decreased function in most of my major organs, and struggle with many complications typical to Sickle Cell. In recent years, meditation has become a useful tool in my effort to maintain my health and control my daily chronic pain.

Despite the restriction of physical activities Sickle Cell places upon me, keeping my mind occupied has always been a high priority. Through the years, I’ve spent my time: learning memorization and speed-reading programs; pursuing my interest to become an artist; and working toward achieving new goals. The pursuit of other personal interests and hobbies help redirect focus off the discomforts of my illness and onto something more productive.

Next to keeping myself as healthy as I possibly can, maintaining my spirituality is the central focus of my life. This has caused me to be very active in my religion and devoted to my faith. Activity in my church has allowed me to be involved in leadership roles, teach youth as well as adults, and at times serve as a missionary.

My emotional journey through life has, at times, been a turbulent one. In my teenage years, due to my high number of hospitalizations, I never expected to live to see twenty; and I was certain I would not live to see thirty. For a number of years, I had zero desire to live to be thirty. However, the adversities of life have a way of changing our world-view. Consequently, being thirty-nine years old was a welcomed surprise that I celebrated. Now I'm forty years old and I couldn't be more pleasantly surprised.

Many people measure success by their career, education, or having a family of their own. These are not the kinds of success I’ve achieved in my life. My success in life, I feel, is measured by how well I have survived it.