A Legacy to Remember: Mary LaBree RSD / CRPS Activist
The 15th of October, a very beloved, beautiful soul and long-time health activist, Mary LaBree passed away due to complications from RSD/CRPS. Here, one of her best friends, Mary Jane Gonzales shares a heartfelt poem with us along with the late Mary LaBree’s story. This was originally posted on the RSD/CRPS awareness Facebook page: In the Blink of an Eye.
By Poet/Author, Mary Jane Gonzales:
“With this being RSD/CRPS Awareness Month, I’d like to begin the month by acknowledging the work of Mary LaBree who is no longer with us. Mary shared a small part of her story with us in September for Chronic Pain Awareness, but was reserving the bulk of her story for an impending book. For those of you who missed her post back in September, you can read it below. Though it offers just a glimpse at her story, I would like to highlight some of her accomplishments that I know of. Her and her daughter’s RSD Support Group was the second support group in the country, and the first to get a state proclamation (back in 1990). She founded the New England RSD Coalition, whose function was to serve and educate: through support, seminars and fund raising. She held teaching seminars with well known doctors; collaborating with them over many years. She was a strong advocate for RSD awareness, and a key figure in the RSD community. Even recently, she was asked to speak at a conference, but had to decline for health reasons.
Before I repeat her post from September, I’d like to share a poem I wrote for her a few months ago for her intended book.
A HELPER AND ADVOCATE
A soldier, a warrior,
A patient with tears,
A helper and advocate
For so many years.
Reaching and touching
All that she could,
To help them endure
What no one should.
Searching for answers,
Seeking a cure,
For her and her family,
And all who suffer
This dreaded disease
Her reason for working
Poem Copyright Mary Jane Gonzales“
My Chronic Pain Story
by Mary LaBree
“I became aware of RSD in the mid 80’s when I went with my daughter to the pain clinic where she had been diagnosed with RSD. Then, about a year or so later, when I got hurt and fractured my spine, my daughter said she thought I had RSD also. So she took me to the same clinic, to see her doctor, and I, too, was diagnosed with RSD.
After that, I went into treatment and it took four years for me to get better. Along with Post Galvanic Stimulation, which helped me a lot, some other treatments I’ve had include:
Alphalipoic Acid (IV)
Radio Frequency Ablation
Though all the treatments have helped, none have been long lasting. As you all know, RSD (Reflex Sympathetic Dystrophy), now known as CRPS (Complex Regional Pain Syndrome) has periods of worsening, be it flares or spreads. I was fifty years old when I got RSD. I am now seventy eight. In those twenty eight years with RSD/CRPS, I have alternated between walking unassisted, walking with a walker, and using a powerchair.
In the late 1980’s, my daughter and I started “RSD Support Group”. We were the 2nd support group in the country, and the 1st to get a state proclamation (back in 1990). It was the Massachusetts State Proclamation and we’ve gotten one every year since. We chose the color red and the month of July because July is considered the Freedom Month.
Later, my daughter moved out of state and she passed the support group onto me alone. In 1997, a colleague who came up for the July “Proclamation Awards Ceremony” approached me to form an organization, which was named the New England RSD Coalition. For all these years, the function of the coalition has been to serve and educate; through support, seminars and fund raising.
I have learned much over the years with Chronic Illness. I have learned to research all that I can about this disease which has affected eight people in my family…which was devastating and heart wrenching. I have learned to advocate for both awareness and patients. I have learned things that I can do to help myself beyond medical treatments, such as:
sitting in the sun
a positive spirit
Helping and doing for others is my “secret” for living with RSD, or just plain living!”
Mary LaBree left a lasting imprint on the chronic pain and RSD/CRPS community. She is one of the first chronic pain health activists. Without her dedication in clearing a path, so many of us would still be suffering in the dark. Mary LaBree’s commitment to her cause shows that life does not end with chronic illness; she made her battle her life’s work. Thank you, Mary LaBree.
**Also read In Memory of Mary LaBree- An Original RSD Advocate from RSDAdvisory, a personal account of a long and loving friendship with Mary.
Since Mary’s passing on October 15th, very sadly, more RSD/CRPS angels have been lost. We honor them all by raising awareness about the seriousness of this disease. Our hearts and prayers go out to their friends and families.
For a non-fatal disease, far too many don’t survive.
Posted on November 10, 2015, in Jane Gonzales, RSD/CRPS and tagged activism, advocacy, Chronic pain, Complex Regional Pain Syndrome, Complex Regional Pain Syndrome Awareness month, crps, Disabled heroes, Jane Gonzales, Mary Jane Gonzales, Mary LaBree, Nervember, rsd, RSD/CRPS, Spoonie. Bookmark the permalink. 4 Comments.
I am so sorry to hear of her passing. I had lived in Massachusetts and RI when first diagnosed. I so wish I would have known her. My thoughts and prayers go out to all her friends and loved ones.The poem that Mary Jane wrote is beautiful.<3
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You are so kind, Kathleen.
And I know Ms. Gonzales will really appreciate your message.
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So beautifully put together. Thank you for sharing Mary’s story, Jane’s love, and providing a place for other’s to come to, to either learn who she was, or remember her fondly.
Thank you dearly, Twinkle. This has been a very precious piece I’ve had the honor of sharing thanks to Jane’s generous spirit.
I’m so sorry for your loss.