I Am Surrounded by HopeLorri C. West Chester, Ohio
I was never the superstitious type UNTIL … What originally started with me casually mentioning to my family doctor that I thought I had arthritis in my right hand has led to a death sentence. I was unable to open water bottles and jars, and my hand was cramping up a lot. With arthritis running in the family, I thought I’d better mention that I have it too in order to get it taken care of. When the doctor looked at my hand, she said, “You definitely have arthritis. Let’s do an x-ray and see what type it is.” At my follow up appointment, my doctor said, “Well you don’t have any arthritis, and your blood work is completely normal. But there is definitely something wrong since you have lost muscle mass in your hand and you are only 38 years old.” Fast forward a couple months to that unforgettable Friday the 13th, February 2004 – when I was first told I have ALS. The neurologist had finished a couple of tests and left the room while I got dressed. When he returned, he asked “What do you know about what this could be?” I immediately responded, “ALS.” I remember seeing this again and again when I researched my symptoms. The way the doctor was feeling me out for how prepared I was, I knew instantly what he wanted to tell me wasn’t good. He responded quickly, “Yes, ALS. I believe you have ALS.” All I could remember reading about ALS was “FATAL, NO CURE, FATAL.” I will never forget leaving the neurologist’s office. Everyone in the office was gone. We were the last appointment of the day. The office was in the basement of the building, so we took the elevator up and walked out through the front door. In that short time since I was told that I had ALS, I had expected the world to change, - since mine sure did. I learned in an instant as I walked out the front door that life will go on. People were walking their dogs, driving by, running by as if nothing had happened. The world wasn’t going to stop. I pretty much decided right then that I was going to LIVE my life through this battle with ALS, that somehow I would remain hopeful. I am blessed to have outlived my 2-5 year sentence, as it’s been over 9 years since I was diagnosed. As my muscles weaken and my muscle atrophy increases, it is definitely tough. But there are only some things that I can control. I am surrounded by HOPE. My sons, Paul and Christian are an inspiration to me with their Kids4Cure fundraising & awareness efforts (Facebook: Kids4Cure). They’ve chosen not to give up until a cure is found. I CHOOSE to be hopeful, to advocate, to know I have done all I can to see a world without ALS someday. I hope I have inspired someone to join us in this fight against ALS.