I make it home from my shortened day at school and collapse with exhaustion on the old flowery couch in the basement. On a bad day, I can't make it to school at all.
On those days, my glands swell painfully. I have terrible headaches. I lie on that same old couch, willing myself to move, to wiggle my toes, open my weighted eyelids. If I can stand, I can barely walk a few steps without my jelly legs giving way to the body they carry. I feel like I just ran a marathon wearing a cement coat. I have chronic fatigue syndrome.
Aug. 11, 2002. I was only 12 when my life changed forever. I was a competitive soccer player and loved the adrenalin rush of downhill skiing. I was active, social, carefree, innocent. I came home from a soccer practice that day feeling a little off. By the next day I felt like I'd been hit by a truck.
I'd been sick before, but not like this. First I was diagnosed with strep throat, then mono. But I did not recover as expected. I was too sick to start my first semester of middle school. I had chronic fatigue syndrome, an illness I'd never even heard of before.
I've been luckier than many with CFS and am so grateful to the many people who have helped me over the past four years. I have been cared for by some bright, caring health care providers. I have been supported and encouraged by wonderful, compassionate school counselors, administrators and teachers. I am sustained by the constant love and care of my family.
The help so many have given me has made what could be an unbearable illness easier. If nothing else, I have learned of the beauty in other people, of empathy, of acceptance, of compassion.
That's not to say my road has been easy. This illness sucks. The name chronic fatigue syndrome does me and others like me a huge disservice. The name is misleading, demeaning, and does not at all reflect the serious, debilitating nature of this illness.
Some experts regard children with CFS as the forgotten population. There's been little research done on CFS in children, and even fewer providers around the country who are educated to care for us.
Please don't forget me, or others like me. I am full of life and potential. I remain a good student. I want to go to college. I want to have a productive career and contribute to our society. I want - always - to have friends and family in my life.
But I need the help of legislators who will promote and vote for funding for CFS research. I need the help of scientists who care and are driven to find the cause and a cure for my illness. I need the help of educated doctors and nurses to provide caring, compassionate treatment that others like me so desperately need.
And I need the help of my community to understand and support me like you would care for and support any other neighbor struggling with a chronic, disabling illness. Give me that hope now, and give us all this hope for future generations.
To those of you out there like me, remember: "Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow." (quote from Mary Anne Radmacher).
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* LAUREN ALLEN lives in Salt Lake City.
