I arrived back from the EDS Global Learning Conference Nashville, got some rotten sleep, and rolled up to Hermosa Beach on Sunday, August 4 for the 2019 Dwight Crum Pier-to-Pier, a wildly popular two mile ocean race. This year, about 1,400 people swam it.

When I went back to stoke swimming in early 2018, I planned to do it only for that summer. I assumed it would be too much for my joints, in which case I would stop. That summer would be an indulgence I would not repeat. My (fingers-crossed) goal was to finish the 2018 Dwight Crum Pier-to-Pier. I did.

Then I kept swimming.

My summer of ocean swimming turned into my winter of ocean swimming.

Even though it was a very big adjustment and quite painful (for months!) as I gradually got used to it, stoke swimming improved my health, which is why I kept at it.

My spine developed the stability and sensibility to cope with it. And with the force of the waves.

The cardio and breath-holding was a nice addition to my exercise regimen. Life is better when you can take the stairs without panting.

My physical therapist helped me with my shoulders. I was having a little pain that didn’t improve as I got used to swimming. Fixing this joint dysfunction made other tasks in life easier.

My nervous system stopped having a crisis of panic and confusion every time I got in the ocean. I never expected that to go away. What? The nervous system can be toned up? Did you know?

My poor injured foot came to love running on the sand and stopped whining about it altogether. Not even a peep anymore.

Circulation heals. Ideal movement patterns relieve pain.

We all need strength enough to cope with the forces of life.

We all need to use our joints well to be out of pain.

I mean not just us with Ehlers-Danlos Syndrome but collagen-typicals, too. But especially us, since we cannot rely on our tendons and ligaments to provide enough stability.

My experience, my strong belief, is that hypermobility disorders MUST be treated with global strengthening through exercise. Our wacky blood pressure problems and brain fog can be improved with circulation. Our nervous systems can be taught to function better with balance and coordination work. The problem is that many of us are too weak and too ill to do it.

Without injecting Ascor everyday, I cannot tolerate exercise and I do not benefit from it.

For any human who is severely weakened, to begin exercise is going to hurt. I went through years of painful physical rehab, in physical therapy and exercising on my own. We tend to have frighteningly severe muscle soreness.

Notice the difference between joint pain and muscle pain.

Free up mental energy for taking care of your musculoskeletal health by giving up time-consuming tasks that may not be doing anything for you, like obsessions with supplements, food or suspected allergies. Are these things actually helping you? Maybe they are distracting you from taking better care of yourself?

Maybe you get stress rashes from the trauma of living with a debilitating pain disease?

Maybe improved circulation plus stronger abdominal muscles and pelvic floor would enable better digestion? Avoiding foods leads to less ability to digest them. Ask the GI doctor.

Maybe those supplements are doing nothing for you? They sure get expensive and are a lot to organize everyday. Since they are unregulated, you don’t even know what you are taking.

It’s worth considering.

Get medical advice for getting off medications that are making you more brain fogged, lethargic and tired. Many drugs do.

Be patient and kind with your delicate, sensitive body. Baby steps. Congratulate yourself on all of your marvelous efforts, not matter how small they seem. Try to do a little exercise and posture work every. single. day. Every day is a day to get better.

Invest in ice packs.

Give up your addiction to stretching and you will hurt less and have more stability.

Strengthen muscles in ways that pull joints into proper alignment. Get expert advice, if you can find it. Educate yourself on posture. Watch yourself in mirrors and in candid pics. The better your joint function in all you do everyday, the less you will be irritating tendons, ligaments, bursa, etc. Improving posture alone will give you pain relief even if you cannot yet exercise. I am speaking from experience.

Joint surgeries on us may do more harm than good. Joint fusions limit all future activity and place greater stress on the rest of our weak, loose joints. The old Ehlers-Danlos National Foundation that was around when I got diagnosed 13 years ago said joint stabilization surgeries do not work, so I never had any.

I limit stroke swimming to once per week. It is a very big range of motion for the shoulder. I do not want to injure myself. Plus swimming does nothing to improve my balance, proprioception and bone density. I need to spend time on effective exercise.

But I love it.

Interrupting my weekend sleep with my alarm to climb into the salty scratchiness of the cold water, the hypnotic, rhythmic crash of the waves, the change in gravity and movement stimulate and soothe my high-strung body and leave me feeling peaceful. All worries fade.

The 2019 Dwight Crum Pier-to-Pier

With the crowds and the excitement, I cannot help but get butterflies. But I tell myself:

Phew!

Speaking to myself this way actually does calm my body down.

This year the starting line was moved further south, which helped the pack spread out and unclogged the course.

I had to stop plowing through the surf, turn around, head back to where I could stand to fix my loose ankle timer. F*ck! I got right back in, determined to stay calm, relaxed and enjoy my swim. This is part of training my nervous system not to go off the deep-end.

A week before, Mr. Pennington and I had seen Billy Ray Cyrus (Miley’s dad) when he made a surprise appearance at the Grand Ole Opry. It was my dream to go there one day.

I wanted to swim an elegant, strong and steady race, to dig in with each stroke, even, focused and smooth. So I played Old Town Road in my head.

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

Baby’s got a habit: diamond rings and Fendi sports bras, riding down Rodeo in my Maserati sports car.

Got no stress, I’ve been through all that. I’m like a Marlboro Man so I kick on back.

Wish I could roll on back to that old town road, I wanna ride ’til I can’t no more!

Midway through this long race, the mental challenge begins.

The water gets colder. The swimmers spread out. You feel alone, staring into the depths by yourself. Your arms get tired.

You cannot let yourself get distracted with doubts. You have to play that song in your head and think about getting the most out of every push of your hands through the water.

And, of course, you’ll be doing this again next year.

I tell myself that, too.

Last year, as I swam the race, I refused to site the pier. I did not know if I could swim two miles. I did not want the slow, pained agony of seeing the pier so far away, wondering if I would ever get there. So with nothing to guide me, I swam way out to sea, towards Japan, and added probably another quarter mile to my race. F*ck!

I was not going to make that mistake this year.

I spotted the shiny metallic buoys they had anchored to guide us. Or the paddle boarders watching over us, when I couldn’t see a buoy, until I was close enough to view it with only a slight forward lift of my head. Then I only looked at the Manhattan Beach Pier.

I watched it get closer and closer and closer, like I was hunting it down. It was delicious.

And then, so quickly, the pier was off to the right of me and I was around it, already feeling sorry that this race was almost over.

It was a rare gentle day in Manhattan Beach, where the waves usually come in hard and hold you under, to show you who is boss.

Today the waves were not strong enough to ride. Still I kept throwing myself in front of each one, as I was taught as a child to do, when you want to get out of the sea fast.

My favorite moment: when I pushed myself up off the sand from all fours and ran.

I’ve been working on my Turkish Get Up. Such a fantastic exercise for whole body strength and power! I am proud to say I can do a truly mediocre one.

When I heaved myself off the sand, I had more strength than I was used to. I could GET UP! F*ck yeah!!!

I passed the man in the tank wetsuit on my run up the beach. How embarrassing for him, I have Ehlers-Danlos Syndrome. Since I regularly get on the treadmill these days, I could RUN! F*ck yeah!!!

Up through the shoot, over the finish line, clocking in at a respectable 1:09, into the hold where I fell into the soft sand. They gave me a bottle of water and a t-shirt and asked if I needed help. Nope my calf just cramped.

And then into the arms of my waiting Instagram husband, Mr. Pennington.

That was a great day of my life. Fun, easy, light, careless.

The opposite of my old disabled life, my life of unending pain, for years of which I could hardly be out of bed for lack of strength and energy.

I saw a guy with a camera strapped to his head at the race. Here is his video.

Yup, that’s what the 2019 Dwight Crum Pier-to-Pier was like.