(This article first appeared in Asheville , NC
I have written a lot about the gifts I have received because I have ALS (Lou Gehrig's disease). I have a new appreciation for living in the present rather than regretting the past or worrying about the future. My friends and my church have given me a tremendous outpouring of love and support. My behavior and attitudes have come under a microscope and slowly but surely have improved. My daughters tell me that I am a better father. I pray more. My faith is stronger.
Words cannot adequately express my gratitude for the help I have received. Members of my church fed me, got me in and out of bed, and took me to worship when I was still living at home. I am grateful for the good care I get now that I am in a nursing home. The staff at the Carolinas Medical Center ALS Clinic have kept me alive and lightened the burden of the disease every way they can. The Jim "Catfish" Hunter (NC) Chapter of the ALS Association has encouraged me with personal visits, provided grants for in-home care and transportation to my Clinic, and been a voice of advocacy with lawmakers in Washington D.C.
To be honest with you and myself, I must add one more thing. I hate ALS. I hate what it has stolen from me. I cannot walk, talk, eat, kiss, hug, or hold a hand. I do not have the strength to go to my older daughter's graduation from college or tell her I am proud of her except by typing it. My younger daughter, who lives nearby, has to visit me in a nursing home. I cannot kiss my daughters' cheeks, hold them in my arms, or tell them I love them.
I hate what ALS has done to my friends in the ALS community. Every week there is news of another brave soul who has lost his or her battle to this fatal and incurable illness. Left behind are grieving spouses and children, some of whom are quite young. It is the women, mostly, who stay in touch after their loved ones die, sharing their grief and attempts to move on with their lives. It makes for heartbreaking reading.
Hating something gives it power over oneself. Every moment spent hating is one less moment loving others and enjoying life. Hatred hurts the hater more than the hated. Hatred is not good for the soul, yet I find that I must express my hatred of ALS on occasion. They say, "Depression is anger turned inward." If I hold all my anger inside about ALS, I get depressed and sick. I know it is time to get angry when all my good humor and serenity in the face of this devastating disease begin to sound hollow to me. The good humor and serenity are true, thanks be to God, but they are not the whole story. I have tried to be truthful in these articles and I will continue to tell the truth as well as I can.
To tell the truth, I hate ALS.
