For those of you following my blog posts for a while, you may know that my daughter has had debilitating fatigue that has grown increasingly worse for the last three years. She has dropped out of all activities, grades have plummeted, we cut her class schedule down to two classes… you get the picture. Not a life you want for your child.
We finally got a diagnosis on Thursday! POTS. I know, not a great acronym, but you get what you get. It is Postural Orthostatic Tachycardia Syndrome. Plus, she has Ehlers-Danlos Syndrome.
So, that’s all just FYI.
What I want to talk about is her reaction to the news.
Frankly, I was expecting a diagnosis of Chronic Fatigue Syndrome. Dr. Lapp is a Chronic Fatigue and Fibromyalgia specialist.
But in addition to fatigue, her symptoms include flexible joints.
Velvety soft skin. (It really is! I pet her like a fine velvet clutch, and use the words, “my pretty”.)
Heightened senses.
Her reaction?
“All those symptoms sound like I am a super hero!”
Wow.
It sure could have been a huge “poor me” or flat out fear.
It is incurable.
It might not ever get better.
She might not be able to get through a whole day of school. Or college. Or work.
She is tired because her heart races like she is running a marathon16 hours a day. (I did jumping jacks for two minutes just to bring my heart rate up to what hers is sitting.)
She will have to change the way she lives to follow the protocol.
And she feels like a superhero.
Once again, she is my role model on how to think like a superhero.
Her reaction has greased the way for my mind to focus on the success rate in bringing POTS teens back to a functioning energy level. (60%)
I keep marveling that the first step of protocol is to eat salty snacks, drink sports drinks, and put her feet up. How easy and painless is that!
You go, Supergirl! I am blessed to be your Mom.
What’s one way in your life you are like a superhero? (Try taking the thing that seems the worst, and see if you can flip it to be your superpower.)
I loved my old flip-style cell phone. One of the things I miss is that my old flip phone would announce who is calling instead of simply ringing.
She was no Siri, but she would proudly announce who was about to touch my life.
I made life a little more interesting by giving everyone a different name. It can be quite a blow to my hipness if the phone is always announcing, “You have a call from YOUR HUSBAND.”
Instead, it said, “You have a call from THE POPE.”
Aunt Audrey was “THE QUEEN OF ENGLAND”.
I didn’t bother to call my sister since I couldn’t think of a good enough alias for her.
My mother was “YOUR PIMP”.
If only I hadn’t been in the back of my son’s 2nd grade class observing when the phone rang.
It was Mom.
I truly don’t think those kids could understand what it said. Her voice was that garbled electronic monotone you rarely hear anymore. And seven-year-olds don’t normally know what a pimp is, right?
Right?
The point is, I have no regrets. I try to make the small things fun, or my day would be made up mostly of things on my to-do list.
Sure, sometimes your phone announces to your son’s friends that your pimp is calling, but life would be dull without it.
What could you do to make the small things in your life a little more fun?
How do you answer the door?
Do you make your canned pears look like bunnies?
Do you make your good-nights sound like the Waltons?
Do you get phone calls from the Pope?
Tomorrow I am going to the grocery store and buying a food I have never had before. Bam!
It doesn’t take much to make my life more of a story than a to-do list.
How about you?
This is a link to the video. I had to separate it from this blog post because the sound was causing me to break out in a cold sweat every time this page opened. It’s the audio that makes it terrifying.
Charlotte just got a trolley last week. How fun.
Whether you agree with funding it or not, it’s here, and the end of the line is within a mile of my house, so why not enjoy it?
On Saturday I went for my morning walk, and as I was coming up Hawthorne Lane, the trolley came.
My daughter was still asleep, alone in the house, but I had left a note, so I thought I would take the 1 ½ mile ride. That way I could report back to friends and family about the fun things we could do in the center city if we took the trolley together.
The transportation department even had people at the trolley stop handing out maps and telling us about the “Gold Line”.
Well done, CATS.
I took nice videos into town and back, and was feeling that it was opening up a whole new world to me. Ahhh. I pictured myself walking to the line every day and continuing the walk uptown to change the whole mood of my day. It’s as if a whole different world is only two miles from my sweet little bungalow.
As the trolley pulled into the stop to deposit me back where I got on, I stood up in front of the door ready to step out. But the driver took all his controls from the front to the back to he could be ready to go in the opposite direction…
…before he opened the door to let us off.
He never got the brake key back in.
We were trapped, and there were no controls. No brakes. And of course, no steering.
We slowly drifted out of the stop, around the turn at Presbyterian, and as we went down the hill passing CPCC we were picking up steam. That’s when the panic was starting to rev up.
Runaway trolley.
And we were trapped.
And picking up speed.
Did I mention we were trapped?
People were yelling, children were screaming, and I heard one woman calling 911.
To make a long story short, we made it through the Independence Blvd cross street without hitting anybody, but there was an SUV stopped at a red light at Kings Drive that we crashed into.
But that didn’t stop us. The trolley pushed that car across the oncoming lanes and kept on going.
We finally headed uphill and came to a stop.
Then more fear as they wouldn’t let us off. We still didn’t have brakes. And there are bars preventing us from jumping out the windows. We could start sliding backwards down the hill and the whole thing would start over.
Instead, somehow it came to a rest underneath the 277 ramp.
And we still couldn’t get off.
No one on the trolley was hurt, but the people in the SUV were taken away by ambulance.
I waited a couple of days to tell this story, because it seemed so rich with lessons.
Thankfulness, faith, all the biggies.
But those don’t seem connected to me at the moment.
I think the thing that stood out to me was how my mind worked while in a state of terror.
There were three long minutes where we knew we were trapped, crossing several major arteries and accelerating to almost twice the speed the news had said the trolley could go.
And in those three minutes, my mind went to the folks in the twin towers during 9/11, when they knew they weren’t getting out. When they had no control and having seen all the Die Hard movies in the world weren’t going to help.
I also thought about folks who are on airplanes that are going down. They, too, have no control with what is coming, but they have time to think about it.
I had a little taste of what they felt.
I thought of them but for some reason I didn’t think about my life and me.
There were no flashbacks.
I wasn’t a hero. I did practically nothing to help the situation.
Except not scream.
But those three minutes did show me one thing. I have done my homework. If I hadn’t made it through the ride, there is no one I have left unloved. I think those I love know exactly how I feel about them and to what depth.
I have no feuds.
I have no grudges.
I know my family would be fine without me.
I have tried to give them tools to deal with big change. And for those who weren’t ready to receive, I have a rich circle of coaching friends who I think would be there to swoop in and catch the fallout.
Maybe I do feel very thankful.
I have done the homework of living, imperfectly sometimes, but I have surrounded myself with wonderful people, I have coached myself in all the areas of my journey, and I know where I’m going.
And if I haven’t told you I love you in the last few minutes, well, I do.
Much love,
Ellen
PS – I do plan to ride the trolley again. It is beautiful, and the metalwork and woodwork are worth seeing. I just have to stop Whitney from calling it, “the pretty wooden box of death” before we board. He does keep me laughing.
PPS – The most striking part of the video is the sound, but for some reason it’s not attached. To hear the ride, try this link…http://www.wsoctv.com/videos/news/raw-streetcar-crashes-in-uptown-charlotte/vDXdW5/