Fibromyalgia · pain awareness art

Sound the Alarm


It was like I was putting out a fire; I was herding and scooping and splashing the painfully slow-rising tub water with my arms and hands and dumping it all over my body in a frenzy. The water was near scalding yet not hot enough, and the sloshing echoed endlessly within my head as I wished I had someone to help dump boiling water on me.

It all started after my chiro appointment, the most recent of many aimed at fixing my back. I went in walking like a t-rex and left walking like heaven, so when the tingling started in my lower back I thought it was good.

As I drove, the tingling went to my legs and began to feel urgent. When my legs started to hurt I knew I was in trouble. But then they began to feel like I was running through the flames of hell…

I describe my worst fibro flare as someone ripping off my skin and scrubbing my nerves down with steel wool. That was happening, but with added hot sauce, restless leg syndrome, and extreme urgency – all poured into the mold of “GET ME THE HELL OUT OF THIS CAR AND OUT OF TRAFFIC AND INTO A HOT TUB *NOW* BEFORE I KILL SOMEONE!!!”

I started deep breathing that reminded me of giving birth to my son. I began chanting a mantra to calm myself, “I’m almost home, I’m almost home, I’m almost home,” but as the traffic continued to not care about my efforts my mantra became “Move!! Move!! MOVE!!!”

It was a 7 alarm fire in hell.

I got in the door and stripped down and jumped in the tub. After the frenzied water flinging, I began to relax and sink into the water…

And that is when I began to see smells. I inhaled the scent of hot water and, suddenly, a colored aura in the middle of my field of vision appeared.

I got myself into bed and passed out in my birthday suit since I was too exhausted to redress. Thankfully, I woke up 4 hours later feeling pretty good.

But honestly, I have never felt such intensity in my body in my entire life. It was awful, and scary, and very concerning.

But thankfully, in true fibro fashion, it disappeared.


Our McDonald’s Story

Oh man, I forgot to tell you guys our McDonald’s story.

My son seems to have developed the same connection with children who have special needs as I have. Not only has it been my career for over 16 years, but wherever I go if there is a special needs child within a certain radius of me, they will flock to me.

I’m not kidding and I’m not bragging; it is just something that happens daily in my life, and I’m not the only one who notices (so I’m not crazy). It can get strange when children start following me around in the store instead of following their own parents, but to be honest it does make me feel quite honored (and I always send them back lol). My son has developed the opposite side of this connection, though. These children don’t flock to him, he flocks to them.

And I hate using the term “special needs”. It drives me batty. But I need you to know that there are children who have speech, communication, sensory, social, and behavioral issues. It’s not their fault, and the whole world has not really embraced them yet. But I do believe we can change this one person at a time, one story at a time.

So here is what happened when I took my 5 year old out to eat last night:

Yesterday at McDonald’s, we arrived while only one child was there. This child had a very difficult time speaking, mainly grunts, even though he was about 7 years old. My son couldn’t care less. Right away he wanted to play with him, and I encouraged him to introduce himself and to ask the boy his name even though he was unable to speak clearly because we have a very important rule in our house – “Just because someone can’t/doesn’t talk, doesn’t mean they don’t have anything to say.”

So my son askedbut but was unable to understand the child’s response. The child’s mother told me her son’s name, so I relayed it to my son who asked the child “Is your name Billy?”

Oh my goodness, I wish you could have heard the loud, resounding “YES!” from the other child! He was so thrilled! My son was very encouraged to keep communicating with him.

They played for quite some time, and the mother shared with me that her child has Downs Syndrome – to be honest, it never occurred to me even though I’m somewhat familiar with it. We chatted, and I told her my experience with autistic children and she just smiled, seemingly relieved, as she said “Oh, so you get it.”

When it was time for  Billy to leave, my son was very worried he wouldn’t have anyone to play with when…

In walked Joey.

Joey is very small for his age, very impulsive, slightly aggressive, very cute, and has a slight speech problem. Again, my son did not care and it wasn’t long before they were best of friends. They ran all around the place, as my son helped Joey climb up things that were too tall for him and even showed him how to pretend hit instead of real hit while playing super heroes.

Soon the entire playland was filled with other kids, but my son didn’t care. As he chased his new friend around in circles past me, another child about the same age and size as my son leaned in and chided him in a very cruel and snotty way, “You’re playing with a BABY.”

OMG. I almost lost it! All these years of advocating for children with special needs, and all these lessons I’ve tried to teach my son – Gone! Gone because of one lame-o, big fat meanie-head kid! I was almost out of my seat to intervene when…

I saw my son look at the offending child, shrug, turn back around, and continue running after his friend Joey.

And then I just sat there, my eyes filling with gleeful tears, feeling as if my child had just won the Nobel Peace.

Why am I telling you this? Yes, it’s great to brag about my son and how he is sometimes the greatest mirror of my own good qualities (as well as my awful ones at times!), but there is a bigger point. Children with special needs don’t always need to be treated “special”, especially when it comes to social play. Sometimes, they just need to be a regular kid, and regular kids are *not* perfect. They need to be asked their name even if they can’t talk, and not in that cutesy, babyish, sing-songy tone that oozes “you’re special”. Just in a regular way. And they need to be acknowledged for their abilities.

And all kids need to know that *everyone* is different. We all have our strengths and weaknesses, and when you come upon someone with a really big weakness you just dig deeper and find their strengths. Everyone deserves a friend. Everyone can play.

And the rest of us? Well, we need to learn to shrug and walk away a little more often. Don’t talk about it, be about it. Go do your thing and make this world more beautiful, and when someone says you can’t just act like you never even heard them.

Thanks for reading. (: