In 1998 on an October night my Mother, Margaret Ray, became the first
punch line in Mental Illness. When she committed suicide, she made the
front page of the NYT, my name was also printed in the story and as a
result, she chose my career as a Mental Health Advocate.
Throughout
my childhood my mother suffered from a brain disease that made her
progressively sicker. Her psychosis and brain damage from chronic
illness led her to believe that she was in a romantic relationship with a
late night talk show host. Her name became a joke about stalking
(http://investigation.discovery.com/investigation/crime-countdowns/stalkers/stalkers-05.html).
It should have been a statement about our inability to get care for a
brilliant, beautiful mother.
After my mother died, my
family founded The Margaret Ray Memorial Foundation. My Grandmother and I
both worked on legislation and every level of advocacy over the last 15
years to change the way that Mental Illness is treated in the US.
At
every opportunity we give silver pins that have a sticker stating
"compliments of the Margaret Ray Memorial Foundation" we have
distributed hundreds if not thousands of silver pins.
The
Silver Ribbon Campaign is for all brain diseases: Autism, Mental
Illness, Alzheimer, and the tragic brain tumors that sneak up and strike
down adults in their prime. Included in research for the brain is also epilepsy, stroke, and the illness that plagues me: migraines.
So I wear a Silver Ribbon for many people, a dear friend who died of a brain tumor, many mothers who struggle to raise children with Autism or Mental Illness, my mother and myself.
This year I am going to set up a separate site to continue my work in Mental Health Advocacy under the name Margaret Ray Memorial Foundation. If you re interested in Mental Health issues please follow my work there. In the last decade everything about our Mental Health Policy has changed.
Most
states have Assisted Outpatient Treatment (I worked for Treatment
Advocacy Center when they were writing the model AOT law) the new
Affordable Care Act will cover services for all brain diseases equally.
Now is the best time in history to have a brain disease.
The
work is not done. We all need to wear a silver ribbon. I wear one
everyday. If you would like one, please contact me, NARSAD, NAMI, The
Margaret Ray Foundation (me) or make your own.
Happy New Year.
Cheers,
ALJ
From fibromyalgia and rheumatoid arthritis, chronic fatigue syndrome to lupus, Myalgia Mommies is an online blog and community for mothers living with the day-to-day problems of chronic pain and parenting. Just trying to share coping tricks to lift another mom up....
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I am so sorry for your loss. Losing my mother was one of the hardest things I've had to endure. Now my little granddaughter, Lily, has epilepsy. She is only 5. She's been on 14 meds since she started having seizures at 18mos. Now she is a possible candidate for brain surgery. I will get my sivler ribbon.
ReplyDeleteThank you for your thoughtful reply. All diseases above the neck are still such a mystery. I hope that we are entering a time when medicine will finally be able to answer some of these mysteries and help many.
DeleteGood luck with your granddaughter.
Cheers,
Anna-Lisa