today is my sister, cheryl's, birthday. she would have been 64 but she died jan. 4, 2009 from complications of ataxia. she weighed about 90 pounds when she died and i'm convinced she had an eating disorder...i think she stopped wanting to live so she stopped eating. i think the loss of independence (giving up her job, her car, her home) put her in a dark place that eventually consumed her. and i think that a combination of the ataxia and her starvation affected her brain and the way she viewed life.
my little sister, pam, and i also have this brain disease. my 4 brothers and my sister, dee, seem to have escaped. we inherited it but neither mom nor dad (both living) have symptoms....but dna testings ties the disease to my mom. whether our children and grandchildren will inherit this is still unknown. i pray that it dies when we die. you want your children to inherit family heirlooms, not catastrophic brain diseases.
i am sad today. it is unbearably painful to remember how cheryl died, and her death left me with an enormous sense of guilt. she didn't have to die. she didn't have pneumonia. she hadn't taken a fatal fall down the stairs. but i could not offer her a lifeline that she would cling to. i tried. her children. her grandchildren. her family. a belief in God. her eyes would shine brightly for a moment but then the stormy sea would swallow her. this is the cold, hard truth: you cannot save someone who does not want to be saved. the families of alcoholics, drug addicts, suicide victims....they grapple with this every day. let go and let God is easier said than done.
i am determined not to let this ataxia swallow me the way it consumed my sister. i rely on my faith. i rely on my family and friends. when bleakness threatens to overwhelm me, i fight back. i ask questions. i research answers. i take responsibility for my health. i eat well. i exercise. i work to keep my brain healthy. my life has changed but i am still grateful for every precious moment.
happy birthday, cheryl. i miss you.
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