I recently served as a consumer reviewer for the Congressionally Directed Medical Research Programs (CDMRP) Gulf War Illness Research Program (GWIRP). It was a rather daunting task at first glance. The thought of facing off with a room full of PhD’s and MD’s raised my hackles to the tenth power, but I soon learned we were on the same level. My input was just as necessary as theirs, and while they looked at the scientific aspects of the research, I focused on how it will be received by the patient, and if it will improve his or her quality of life. When all was said and done, I was intrigued. Turns out it was like the scariest ride at an amusement park; it takes everything you have just to build up the courage to jump on, then it doesn’t last long enough, and you can’t wait to give it another go.
Twenty years seems like a lifetime to most, but it is like smoke through the key hole unless it is spent suffering. I have spent the last two decades of my life in three stages. I am either getting over pain, in pain, or about to have pain, and this leads to many sleepless nights. That is why I am sitting up at 3:22 in the morning typing this. Normally my nights are spent combing through the newest research; trying to sort through the conspiracy theory garbage, and attempting to find truth, or something that might have been overlooked. It may sound like I am just a guy with too much time on my hands, but looking up research efforts is the only thing that helps keep my mind focused on something other than my pain. Ironically this has led to chance meetings with others that have common circumstances or goals in mind. It has also led me to a symbiotic relationship with the National Gulf War Research Center (NGWRC Inc.), which was my first step to becoming a consumer reviewer. For many years I decided being a reviewer was not for me, because I figured my input would be ignored. That’s when I was nominated, and I am glad I was.
I have not always had the ability to function with my Gulf War Illness (GWI) symptoms, and the symptoms were not all that affected me. Over the last 20 years my illness has caused me many problems that neither doctors nor the VA hospital could help. I lost my family, my home, and almost my life multiple times. I spent seven years sleeping in the trunk of my car that was parked in VA hospital parking lots. I had to sleep in the trunk because if I was caught they would kick me out, or I would get arrested. I was only receiving $210.00 a month for my knees, and ringing in my ears, but I was diagnosed with fibromyalgia, chronic fatigue, IBS, and had seizures. Through all this, VA denied all my claims that might be due to GWI. Finally in 2010 I was found 80% disabled and unemployable by the VA. At least now I have enough disability coming in so I don’t have to worry about freezing to death in the trunk of my car in Detroit, Michigan winters. With those worries off of my mind I am now trying to focus on helping other veterans, and trying to get my life back together. I know I am not the only Gulf War Veteran having these problems. That’s why it is my duty as a Marine to do anything in my ability to improve the way many Gulf War Veterans have been treated. Let me make one thing clear to the VA: It’s not all in my head! I know they still think this, and that is why research must continue.
The biggest problem I see with current research is it does not seem to be focused on finding a cause or mechanism for what has been damaged. Everything is now being focused on treatment of symptoms. Many of us have learned this year that the one symptom that we want them to focus on is death. This is why the CDMRP is so important. Michael Woods, one of the most outspoken advocates for GWI we had, lost his fight with GWI on Veterans Day 2011, the day after his 42nd birthday. Right now we are losing this fight one funeral at a time. The VA says it has changed but I still have doctors that look at me like they have never heard of GWI. This has to change! This is why being a consumer reviewer is so important. One day a researcher will find out what really happened, and I am sure The CDMRP will be a big part of that.