I can simply find no words. I started to write a missive to you earlier, but I languished in trying to find the right words to say that would bring you comfort. It was like placing a bucket down a well, and the bucket coming up empty.
Perhaps sharing a personal momento will provide a window of understanding.
My brother was 16 years of age when he was diagnosed with a
Grade IV glioblastima multiforma. I was 12 years of age. My family was already experiencing stress related to my brother's epilepsy. He suffered from intractable grand mal seizures, multiple seizures a day. The timeframe was 1978. There was no ADA (Americans with Disabilities Act), there were no provisions for special education in the public school system. Out-reach resources were scant.
I am if the opinion that a serious illness either pulls a family together or pulls a family apart. My family imploded. My family was not able to weather the surmounting toxic stress.
The bond between my brother and I was genuine. I was his "life guard" at school and protected him from the effects of bullying. I viscerally felt my brother's pain. My brother's pain was my pain.
I turned to long distance running as a means to cope with my brother's grim prognosis. I was inherently petite with a small body frame and feather weight. Running was a natural fit. I ran like a gazelle across the open and grassy plains. I ran. And I ran. And I ran. I would run upwards of 6-8 miles a day after school and assigned chores.
I ran to escape the pain of my brother's plight. I ran to numb the swirling sea of emotions that I did not know how to process. I ran to escape the dark shadows that followed behind me.
My passion for running seemed benign to those around me. But it was anything but harmless. I ran, pounding the ground with each step.
Running proved to be insufficient to relieve my emotional distress. A full-fledged eating disorder followed in due
course. I simply stopped eating. It was a silent cry for help.
I come from a family that does not identify with emotions. Emotions are seen as a sign of weakness and are best unexpressed. "Buck up," has long been my mother's commandment and admonishment. Tough Love. Neither parenting approach served me or my needs.
If I can offer any pearls of wisdom to families dealing with a life-altering illness, it would be to make sure that communication within the family is encouraged and allowed to flow freely. Do not be afraid of the expression of emotions, even emotions
that you may initially be intimidated by. Learn to recognize and name your own and varied emotions, and then engage your child to learn to recognize and name emotions. Most of all, allow real emotions to flow. Allow crocodile-sized tears when the need presents itself. Do not demand that someone be "strong" as a false front or identity.
My brother is now 60 years of age and I am 56. In the perplexity reality, my health is immeasurably more comprised than his. I manage my brother's finances and serve as his de-facto parent.
Exaussie, I hold you in tender prayer. I am so very, very sorry for the loss of your precious daughter and endearing son. May they be reunited in spirit in the presence of God. May you have peace knowing you were the one-and-only mother that they both needed.
- Karen -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.