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
Called RSD…
Her reason for working
So tirelessly.

Poem Copyright Mary Jane Gonzales

*******

A Legacy to Remember: RSD/CRPS Activist Mary LaBree

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:

Medication
Nerve blocks
Physical therapy
Aquatic Therapy
Acupuncture
Chiropractic
Alphalipoic Acid (IV)
Reiki
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:

exercise
warm baths
sitting in the sun
a positive spirit
~and~
GIVING

Helping and doing for others is my “secret” for living with RSD, or just plain living!”

-Mary LaBree

******

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.

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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 11 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Four years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 4 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on November 10, 2015, in RSD/CRPS and tagged , , , , , , , , , , , , , . Bookmark the permalink. 4 Comments.

  1. 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

    Liked by 1 person

  2. 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.

    With gratitude,
    ~T

    Like

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