Lamar Johnson

At the outset of 2012, I made a decision. I was going to start doing some of the things that I've always wanted to do with my life. In 2008, I was diagnosed with systemic, discoid and lupus with an anti-coagulant. I had to leave the working world and become a stay-at-home parent. I soon became deeply depressed, so my wife and I decided it was time for a change. I enrolled in college, hoping to get a degree in graphic design - something that I'm really good at. I never expected my first year of college life to start the way it did.

I started school the summer semester of the 2011-2012 school year. I was so excited that I was going after something I had always wanted - a career in graphic design. My first couple of weeks went off without a hitch, until I had my first and most serious lupus complication. I woke up on a Saturday feeling funny. I went outside on my front porch and found myself soaked from sweat at a cool 7 am. I went back in the house and started having violent tremors and muscle twitches I couldn't control. I had just had my first seizure of the weekend. They treated me at the hospital, then sent me home.

The next morning my entire world changed forever. I woke up covered in sweat and feeling nauseous. I went to the bathroom and just lost it. My body gave way and I collapsed between our tub and the toilet. The front of my head struck the tub and the back of my head hit the toilet giving me two hematomas on my brain. I was having a seizure and two strokes in the cerebellum portion of my brain.

I was rushed back to the hospital where I resided for about 2 weeks before I was sent to the ICU. While I was in the ICU, I either died for a quick moment or had an out of body experience. I hovered over my own body and saw my wife sitting by my bedside next to my head and my father down at the foot of my bed. I heard an aggressive but soothing voice tell me, "Lamar, you have more work to do, it's not your time". To me, there could only be two beings in this world that could do that - my late mother who passed away from ALS in 2004, and the Almighty God.

Religion has played a big part in my recovery efforts. Last year, I was so excited about the Walk for Lupus in Kansas City, but couldn't attend due to a heart attack. My wife, my family, and our friends attended the walk in memorial of me. My wife and daughter even carried a picture of me.

Over the course of 2012, I was hospitalized a total of 28 times due to lupus complications. I had to leave college until I can get my brain to function properly again. But I have found more to do with my life than just sit at home and feel sorry for myself. I WANT to be a strong voice for men living with lupus and an advocate in our fight to find a cure. I've decided to donate my body to science so doctors can figure out why it hits African-American men so hard. But I want to be a force now, and KNOW I can be. I am committed to becoming one of the best advocates for lupus in the Greater Kansas City area. I may not have big money like other people in the walk do, but I do have a BIG heart that will not give up until I reach my goal!