By Maria Mooney

What would a notable New Jersey Senator want with little ol’ me? I asked myself this very question at the start of 2010 when I received a call from Senator Joseph Kyrillos’ office asking me to come in and share my story, which is explained in detail here. Shortly after, I gained my composure and reminded myself that I am special, unique, and worthy of the Senator’s time because my passion brings me joy and provides me with endless opportunities to serve others. Before I reveal the outcome of our electrifying meeting, allow me to provide you with some basic pointers pertaining to advocacy work and the “how to’s” of meeting with your legislator.

1. E-mail, call, or write a letter to your legislator about the topic of interest you have a desire to advocate for. Make it short and sweet, while adding the most important details and leaving out extraneous information. Remember, these are busy folks, so be memorable and BE KIND!

2. Before your meeting, make Google your friend. Read up on your legislator’s biography, the issues he/she is a champion for, committees he/she serves on, and awards he/she has received. Knowledge is power no matter what the circumstance.

3. Prepare the documents that you will be presenting to your legislator, and if you are like me, carry them in a bright colored folder! I chose bright orange (pink and purple were runners up). For example, I left a brochure explaining RSD/CRPS, my resume, and my first CSL blog post with information on crazysexylife.com. What is a meeting with a senator without mentioning Kris Carr and Crazy Sexy Life?

4. If you know your nerves often get the best of you, practice speaking beforehand. Keep in mind, you will have thirty minutes or less to meet with your legislator, so use your time wisely. Kill him/her with kindness, passion, and a snazzy outfit. A little sparkle never hurt anyone!

5. Meet with your legislator! Make eye contact, remember your manners, and use body language that expresses confidence. Convey to him/her that your message is unique and your cause is worth his/her time, effort, and backing.

6. Follow up with your legislator and his/her staff within a few business days expressing your gratitude for the opportunity. Let him/her know that you are excited and will be in touch to follow through with what you discussed together.

7. Pat yourself on the back for a job well done! You just met with a legislator!

Meeting with Senator Kyrillos was like meeting with a very accomplished friend. His presence and charm are undeniable, but his ability to make you feel comfortable on the spot is pure magic. A few minutes into our conversation, I stopped shaking and started doing what I do best, which is advocate for holistic, compassionate, affordable, integrative, and individualized care for persons with chronic pain and illness. I want the patients to be viewed as the expert, minimizing the large power differential that exists between doctor and patient, and the health professional to be the facilitator of holistic and integrative care. “First, do no harm,” is a principle that has been overlooked in recent years, creating a system where diseases progress and individuals are left to solve their problems alone.

The Senator’s main question was, “How can I help you accomplish your goals?” We came to the following action plan:

1. Create a personalized website for persons with chronic pain.

2. Write a proposal to Congress (where I will testify) and a press release.

3. Increase my own advocacy work. My long-term goal is to lecture to health professionals in hospitals across the country about chronic pain, illness, and disability and the above mentioned topics of interest.

For now, I am thrilled with the outcome of our meeting and excited for what the future holds. As a budding social worker, advocacy runs through my veins, and my life is dedicated to the service of others, especially the vulnerable and the oppressed. Remember, YOU can make a difference! Now, go forth and serve others!

Maria Mooney

Hello, Happy Healers! My name is Maria Mooney, and I am a proud, mostly raw, vegan graduate student munching and working my way toward a clinical M.S.W. in mental health therapy. Did I mention I also have a rare, progressive neurological disease, which has no known current cause or cure? It’s true! I have been blessed and cursed with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS), a progressive neurological disease with the main symptom being chronic, burning, stinging, shooting neurological pain. Lucky me, all four limbs happen to be affected, with the most disabling pain in my lower legs and feet, and I daringly fight each day for my mobility.

While many people diagnosed with RSD/CRPS are forced to use wheel chairs, crutches, or other mobility enhancing devices, I have evaded the aforementioned and even obtained a 4.0 GPA in my first year of graduate school with Kris Carr’s raw, vegan diet, strong opiate medications (a.k.a. “leg juice”), a strong support system, and an even stronger desire to live a joyful, fulfilling life.

I picked up Kris’ documentary, Crazy Sexy Cancer, during my first hospital stay two years ago, and quickly followed suite reaping the benefits of a diet high in anti-inflammatory fruits and veggies and low in inflammation causing animal products and processed foods. This is of infinite importance for an illness where incredible swelling, which I have little to none of, is a major symptom and mobility/spirit stealer. It also provided me with a sense of empowerment that I could make a significant and strategic difference in my health, despite the grim prognosis. I could beat the odds! Not to mention, it has kept my weight low and healthy, which plays a vital role in allowing me to, well, stand at all! Think about it, the more weight a set of painful legs and feet has to bear, the worse the pain will be.

Let’s rewind several years ago to when the first signs and symptoms of RSD/CRPS developed. I was running 40+ miles a week for a division one university and was perpetually in motion. You couldn’t catch me in one place for very long, and if you did, you better have been able to keep up with me as I moved onto the next location.

As the symptoms progressed, the amount of time I could stand lessened until it became a few excruciatingly painful minutes, and not long after, I fell into a deep, reactive depression. A depression I now know is very common and quite normal for those experiencing chronic pain, but the stigma around mental illness affects a suffering individual’s access to care and, ultimately, his/her right to happiness. Chronic pain has the ability to wipe out any sense of self you possessed before and replaces it with a never-ending black hole of self-loathing and a clear disdain for life as you now know it. This is when we must enlist the help of a knowledgeable professional to bring us back to center and point us in the right direction of health and happiness.

Two years of intensive mental health therapy later, I possessed the proper and effective coping tools to deal with my altered existence, but it wasn’t until I freed myself of the notion that life is supposed to be “perfect,” without pain and suffering, that I began to really live. Once I embraced pain in my life, I could sit with it, feel it, be it for some time, ultimately, let it go, but most importantly, LEARN from it. The pain no longer had the power to ruin my days and make my decisions for me, and with that, I closed out fear and opened myself up to the healing powers of love in all of its splendid forms. Most importantly, I opened myself up to a love and acceptance for my unique, empowered self as I am in this moment, and I saw my disease as a vehicle for my personal growth and development. I discovered I have something to offer this world.

A friend once told me I was a special and unique individual, a single unicorn among many horses, and cleverly used what I now call the “unicorn analogy.” The unicorn analogy celebrates our individual uniqueness and our ability to understand that we are special, no matter what illness or burden we carry, no matter what size or color we are, and what infectious power comes with this realization. Each one of us is one of a kind, an alluringly beautiful creature, strong, wild, fierce, and impossible to tame with exceptional endurance, perseverance, and wisdom, might I add? A symbol of hope, love, and faith with an unconquerable nature! Did I mention beauty?! Inside and out. With a sharp wit that only a lucky few possess, my friend once uttered with the best of intentions, “Feel lucky you are a unicorn. They put down horses with bad legs.” And, to that, I say, “AMEN!” Embrace the uniqueness in you and share it with the world as part of your healing journey, your illness evolution, and you will touch the lives of others while self-actualizing, personally developing, and healing yourself, mind, body, and spirit. I can guarantee it. And, isn’t that the purpose of it all?

Happy Healing, Unicorns!

<3 Maria

Maria is a 25 year old, vegan graduate student living with a progressive neurological disease, Reflex Sympathetic Dystrophy (RSD). Follow along as Maria reflects on lessons learned through her health challenges, shares her experiences with alternative and traditional treatments, and enjoys life to its fullest at her blog!