My son, Collin, has FM. He’s 12 years old, but already we’ve been asking ourselves: how do we make people aware? How do we help them understand what the fatigue and pain are like when you have fibro, when you are 12 years old? Is there a way for us to help make this happen?
In March I found out about the proclamation program, a way to raise awareness by soliciting proclamations from government officials. I wondered if Collin would want to do this—be involved in the process. Could I also teach him about the levels of Government in the process? How would we get the information to our Mayor, Senator, and Governor—and would we dare try the President?
We began with the process of finding names (spelling the California Governor’s name is not that easy!) and addresses as well as fax numbers. We would learn to really be grateful for our home fax machine!
Collin hand delivered to our Mayor’s office the proclamation request. The receptionist looked at Collin when he was done speaking and asked incredulously, “You want this to go to the Mayor?”
“Yes, please,” Collin replied. The receptionist looked at me and I reaffirmed what Collin had told her. “Okay, I will see that she gets this.”
Well, one down and three to go!
We filled the other requests out and signed them. We included a picture of Collin so that they would know he was a real person since these were going via the fax machine! We decided to go ahead and send one to our President, thinking that not much would come of it. Collin had done a report on President Bush a few years ago for school and felt excited at the possibility of a reply.
Then the waiting game began. Hmmm, should we call and check? No, let’s just be patient and wait. (Not easy at 12!)
The first response came from our Senator’s office with a letter. Then the phone rang with our Mayor’s office calling to say that a proclamation had been signed at a council meeting the night before! I offered to pick it up, as I wanted Collin to see what his efforts had brought the NFA. I picked him up from school and passed him the envelope. He looked at the address and just got the biggest grin on his face. “It worked, mom, it worked!”
A week later another envelope appeared in the mail from the Governor’s office!
Inside was a wonderful letter from our Governor. We were excited at the results we had received from simply mailing/faxing a letter with information about fibro and the need to make people aware and proclaim May 12, 2006 Fibromyalgia Awareness Day.
Then it was Thursday, May 11. Collin was home from school not feeling well. The phone rang around 10 AM and Katye from The Office of White House Correspondence was on the phone asking for me. Oh my! I tried not to drop the phone as Katye explained that she had a letter that she would like to fax to me regarding Awareness Day. (Ahhh, the wonder of the fax machine!) Then the original would be mailed out to us. WOW!!
I said thank you very much, and we were absolutely thrilled! Then I got off the phone and told Collin what had just happened. We were beyond thrilled, a phone call from the White House. That certainly does not happen even once in a lifetime for most of us! We impatiently waited to hear the hum of the fax machine begin. Finally it started and we both rushed over to watch the fax come through. There was the picture of the White House on top and it was from “The Office of Presidential Messages!” We were both laughing and grinning from ear to ear. Yes, Mr. President actually signed it! Wow! His letter states that his “administration is funding research programs to help understand Fibromyalgia and is committed to finding better ways to diagnose, treat, and prevent it.”
Collin and I will take him at his word and holdfast to the promise of his words for the future of all who have this illness.
What an experience this has been. Hopefully we will all learn to forge ahead in this fight for all whose lives change because of it—to go to all levels of government or any and all people that we believe can help in the cause to make people AWARE!