Exactly what does it take for California state legislators to recognize the toll that a rare disease such as Transverse Myelitis (TM) has on it’s constituents. It takes a dedicated California resident; Sandy Rey, a woman who poured her soul into raising awareness for a condition that she herself lives with.
A TM diagnosis is life altering to say the least. The challenges faced by those living with TM can be compared to living life trapped on a perpetual rollercoaster where the tumultuous ups and downs never cease. All while your family, friends and community are helplessly planted on the ground watching you scream your way through the ride.
Sandy knew that she had to do something to make a difference so she single handedly took on this seemingly impossible mission.
The first step in solving a problem is recognizing that a problem exists so Sandy Rey took on the task, which often felt like a losing battle, to raise awareness in her home state. From the drafting of her awareness proposal to the implementation of SCR-31, Sandy shares with us how she succeeded in getting SCR-31 enacted.
“It’s not in our wheelhouse.” “We are reviewing your proposal. Someone will get back to you.” “No. Try the Health Committee.” “We must exercise due caution.”
In 2014, three years after my transverse myelitis diagnoses, I proposed to my state legislators a formation of an official California Transverse Myelitis Awareness Day. Since no national day existed, I decided to advocate for a specific date to recognize transverse myelitis in my home state. Perhaps a special day might help raise awareness through educating the public and medical community. If my efforts were successful, California would become the 17th awareness state at the time.
I began by writing an awareness proposal. I stated facts about transverse myelitis, the need for legislation to support research, and the need for resources for individuals living with the disease. I also included copies of awareness day resolutions passed by a few other state’s legislators. In addition, I wrote about my own struggles with transverse myelitis. It was a challenging and time consuming task that I could not have done alone. I reached out to my peers for guidance. Transverse myelitis support group administrators were happy to share information, make suggestions, and offer positive support. Much thought and effort by many people went into preparing the appropriate documents. The completed paperwork was sent to my senator’s office. After a reasonable amount of time had passed, I made the follow-up call that left me feeling defeated. You have read the responses listed at the top of the page. Like you, I was flabbergasted to discover that no one in Sacramento was interested in raising awareness of transverse myelitis. How could my state not realize the importance of educating the people of California about this awful disease? Frustrated, I dismissed the idea and walked away from the proposal. I felt disappointed, sad, and even angry. There would be no California Transverse Myelitis Awareness Day.
Fast forward to the year 2016. Our worldwide transverse myelitis community was reporting a rise in transverse myelitis related deaths. Where is the cure? Can state-by-state awareness help? Would the creation of another Transverse Myelitis Awareness Day really make a difference? Could it help to increase research and improve treatment? I don’t know the answers, but nevertheless I take a deep breath and start again.
As the old adage goes, desperate times call for desperate measures. I have a friend who had once served in the senate. Knowledgeable in the workings of our government, he knows how to get things done. So I take advantage of his expertise. I am no longer reluctant to ask for his help.
We chat over coffee one morning and I explain the situation. I ask my friend to take a look at my rejected work. Please could he read it and suggest edits? He agrees. Months pass before I hear from him again! But when he does make contact, he greets me with the best news ever! There is a senator who has agreed to author the resolution. California Transverse Myelitis Awareness Day will soon be a reality! Much work follows, including more than a few rewrites of the original proposal. There is frequent communication between my neurologist’s office and the senator’s office. I am caught off guard when I receive an invitation to be the senator’s guest on the day the resolution is to be introduced and voted upon. The senator asks that I invite other advocates as well.
On a sunny morning in June, three transverse myelitis warriors, along with friends and family, gather at the State Capitol in Sacramento, California. We hug and chat and do our best to calm our nervous excitement. We have been invited to stand on the Senate Floor, and we know this is a huge honor. When the time comes, our group is escorted to the gallery. The senator approaches the podium and introduces the resolution, now known as SCR-31. We stand with the senator and he introduces the three of us. He then proceeds to share information about transverse myelitis. As there are no questions, SCR-31 is then voted upon. It is unanimously passed. The senate recognizes June 6, 2017, and every June 6th thereafter as California Transverse Myelitis Awareness Day!