Gurl, You Kinda Are an Elite Athlete

I left the Nashville Ehlers-Danlos Learning Conference before it ended. I needed to get back to Los Angeles. I had two piers to swim around, a finish line to cross, and two miles of ocean in between.

I was so glad I had attended. I plan on going to the next Ehlers-Danlos Learning Conference in Arizona 2020. The chance to talk face-to-face with so many people born with my rotten disease, to look into their eyes and see how their pain is like mine, is something I need, as it validates what my life is been.


To be truthful, I usually arrange to cut out of these conferences early. They are intense and emotional. I get overwhelmed. Since I don’t want to cry in front of everyone or alone in a hotel room, I suppress it. This ends up making me quite nauseated.

This pic was taken with my homies from So Cal, Aly @bendybones and Brianna Healed + Empowered after the memorial reel was shown, a film with photos and names of those the Ehlers-Danlos Society knew of who had lost their lives to EDS in the past year. Some were by vascular accident. Others were by suicide. We really need better care and more understanding. The suffering of EDS is too much.

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I also left the conference with pain at the top of the back of my neck. Too many conversations with my head sharply turned to look at the person next to me, those muscles were sore! I don’t usually hold my head like that so my suboccipital muscles got a big workout. Ouch!

The atlas (cervical vertebrae #1) and the axis (cervical vertebrae #2) are some of the most mobile joints in the human body because they have the job of maneuvering the head.

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The atlas is the joint that moves the head up and down.

The axis moves it side to side.

These are healthy and natural moves when the spine is properly stacked with supportive muscles engaged, not slumped.

Why any surgeon would do a spinal fusion on one of us without first insisting on posture correction and strengthening plus time (lots of time!) for inflamed tissue to calm down, I do not understand. Isn’t that malpractice? How would fusing one area of the spine without correcting posture even turn out right? I could go on ranting.

Find yourself good physical rehab, Kids. That is not exactly easy.

Back to my throbbing neck.

In the past, pissing off the tissue at my atlas and axis would trigger painful, crazy, wacky, stabbing spasming down around my tailbone, and severe headaches, with bad sensory overload. It would be difficult to sleep over the pain.

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Earlier this year, I let my physical therapist perform manual work on me, like actually touch my neck. He did trigger point release on shoulder blade muscles, and a little distraction of my neck to help it function better.

We also strengthened the muscles at the front of my neck, the ones that are there to hold my head up.

His work was very rough for me, even though he kept it extremely gentle. My body reacts strongly. At first, it triggered delayed painful spasming that was so stressful, I broke out in rashes. But after a few times, I tolerated it and then in life I could use my neck with more ease, without triggering wacky phenomenon. So that was awesome.

Body, you can get smarter and sort yourself out and knock off the overreacting! Good job!

This pain at the base of my skull after the conference was pure and simple overworked muscles, nothing crazy on top of it. This made me proud.

My throbbing neck was not my only problem. Prolonged sitting on a plane gets me. After three hours, I start having low back spasms that make it hard to sit still. I wish I could pace up and down the aisle but I don’t. I just sit and let it get worse. Ouch! On the way to Memphis I had a stop-over and 20 minute walk in Dallas, across the airport. I arrived in Tennessee feeling wonderful. Flying home, I flew direct. Ouch!

This phenomenon tells me my lumbopelvic hip complex needs more help to function better. Perhaps muscles are weak and/or over-firing and not definitely working in concert properly. But this can be fixed.

Meet Dr. Emily Splichal, Manhattan podiatrist and movement specialist. I love a medical doctor who can really think. What a fantastic exercise!

I also scheduled with my physical therapist to get his expertise.

I took a nap and had a really good cry. Or maybe four.

It was a beautiful day in Manhattan Beach when I came to pick up my rack packet. What’s that, you ask? A swim cap colored for your division (wetsuit, female), timer to strap to ankle, plastic bracelet with bib #332..

It was time to jump for joy.

I was intent on enjoying this year’s race after last year’s Ehlers-Disaster.

The Dwight Crum Pier-to-PIer is the greatest ocean race on Earth, if you ask me and the other 1,350 swimmers who signed up, from 30 states and 6 different countries.

2019 Pier-to-Pier

2019 Pier-to-Pier

The course is:

  1. Run into surf.

  2. Swim around pier.

  3. Swim two miles North, against current.

  4. Swim around pier.

  5. Run to finish line.

What could be better?

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The Elite Athlete

An elite athlete is able to manage and harness his fight-or-flight response. This idea fascinates me. What would it be like to have excellent vagal tone? My body reacts with panic-anxiety to almost everything. This is a horrible feature of EDS.

The elite athlete makes his body do unpleasant and downright dangerous things, overriding the brain’s efforts to protect him.

The elite sleep enough before competition.

The elite aren’t terrified of injury.

The elite manage their defeat.

The elite have endurance.

The elite save all that adrenaline and explode it, at will, at race time. Wow.

I like to play pretend.

Gurl, You Kinda Are An Elite Athlete

My sleep before the race was not as I had hoped.

Our neighbors had a very loud party we could not block out even with the windows shut and A/C on.

Body, I understand and respect how hard you are trying to deal with my global instability. Good job on the effort.

My low back was not done torturing me with jolting spams that woke me up. By 1:30 a.m. I could no longer ignore it.

Mr. Pennington packed me in ice. I unloaded the dishwasher to get some gentle dynamic stretching. I was very angry at being in pain. At least the kitchen would be tidy in the morning.

I was angry that I no longer have a drug like morphine around, that makes you not care about being in pain, because that was helpful.

It was awful to be up, a reminder of my old life, before my precious race. But I had gotten deep sleep between 10 p.m. and 1:00 a.m, the most restorative hours are the first few, and for this I was grateful.


Until and unless I get my LPHC sorted out, spasming like this will happen again. I am lucky to be feeling so well overall. I told myself I would probably get back to sleep, and either way, I probably had enough rest for my race.

Accepting EDS is an on-going project.

I got back to sleep and was sleeping hard when my alarm went off at 7:00 a.m. race morning.

While in Nashville, Mr. Pennington had taken me to the Grand Ole Opry, which was on my bucket list, so I jumped for joy.

It was such a wonderful evening of honest, beautiful, unadorned, sincere music-making, to be truthful, I cried.

Billy Ray Cyrus (Miley’s dad) made a surprise appearance.

Hat down, cross town, living like a rock star, spent a lot of money on my brand new guitar.

The song I picked to play in my head during the race was his, because singing it along with Billy Ray and the entire audience at the Grand Ole Opry was a peak experience.

I wanted to embed it with my sense memory of swimming in the ocean, which I let myself daydream about when I need to wind my nervous system down and peace-out.

Yes, that’s Mr. Pennington and me you hear singing.

I will tell the story of my race next week. This post is already too long.

Take a deeper dive with Dr. Emily Splichal here.