Hello dancers! I know it’s been awhile. While I’ve been living a full life in the physical world, to be honest, I’ve been more than happy to not be bothered with the digital world and its insatiable appetite for new content. However, I first connected with many of my readers and dance friends on this blog, so for those of you who want to know what I’ve been up to, keep reading! If you’re just coming across this website, this post will be far less relevant to you, but I invite you to keep reading anyway, if you like.

When we last met here, I was in rehearsals for the ballet Coppelia. I was excited and nervous to be performing in my first ballet production. It seemed like a great opportunity to challenge myself as a dancer. Unfortunately, I ended up dropping out of the show, along with several other dancers. It was the first time in my dance journey that I walked away from something I had committed to. I struggled with the decision, but when I finally made it and told the director, I felt a weight lift off my shoulders.

I continued taking class with my regular ballet teacher, and then the next opportunity to challenge myself came. The dance school was adding an adult tap class! I had tapped when I was around 6 and 7 years old, but hadn’t revisited the style as an adult. Tap is like ballroom though, in that it doesn’t require a youthful body to start learning and actually get good at. You may have seen the video I shared of the routine we learned over the 8-week course.

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Whenever you learn an entirely new style of dance, you also learn a new dialect. My brain got as much of a workout as my body in tap as I tried to remember new terms like flap, spank and shim sham while also trying to coordinate which part of my foot made noise in what order. I had a blast, even when I thought smoke might start coming out of my ears from concentrating so hard.

The start of summer marked a brief break in ballet and tap and the beginning of my second job. Last year, I started working sporadic weekends as a server at a farm that hosted and catered weddings. The team was fun to work with and it was great to make a little extra money. So for my second season, I opted for a more regular shift schedule of every other weekend. The extra money was especially welcome as our next house project is a full kitchen renovation, but the 6- to 7-hour shifts have been hard on my body.

I’ve had chronic joint pain since I was a teenager. Something was always hurting, whether it was my knees, back, hips, neck, head, etc. The pain wouldn’t keep me from dancing, though some days I had to downgrade from dance heels to dance sneakers. Through the years, I intermittingly sought answers for why my body always hurt. I was frequently told by doctors that they couldn’t find anything wrong with me. At one point, I was told I could have fibromyalgia, which translates to “you have widespread pain and we don’t know why.” I made some progress in 2019 when an orthopedist told me I had chondromalacia patella (basically cartilage wear and tear) in both knees and prescribed physical therapy. That didn’t explain why my hips gave me problems or why I got headaches every week though. Finally, this year, I got my answer.

I’ve been diagnosed with hypermobile Ehlers Danlos syndrome (hEDS), a genetic connective tissue disorder that results in joint pain and instability, among other things. Obviously, there was a reason I connected with the Scarecrow more than Dorothy when Teacher and I decided to do a Wizard of Oz showcase number.

I first heard the word “hypermobile” in reference to my body during physical therapy for my knees back in 2019. My physical therapist checked my hip alignment at each session and it was almost always off. As headaches and joint pain began interfering more in my dancing in the last year or two, I began to do more research. I connected with a specialist in Southern Maine who evaluated me for hypermobility in general and Ehlers Danlos specifically.

I felt relief, of course, to finally know why I hurt all of the time and why some past physical therapies didn’t help relieve my pain or even made it worse. It felt strange to celebrate finding out I had a genetic disorder that had no cure or specific treatment. When I shared my diagnosis with people close to me, they had similar reactions, like “congratulations…??” At the end of the day, it still feels much better to know that I have a disorder causing all these issues, rather than feel like I’m in pain for no reason.

The good news is hEDS is not a progressive disease, meaning I’m not going to get worse no matter what I do. The better news is it is possible to manage the symptoms caused by hEDS. The best news is I was able to connect with another doctor who specializes in coaching people with hEDS and other hypermobility disorders. She put together a program for me that includes specific exercises to help strengthen muscles to better support my loosey goosey joints and tools/strategies for dealing with flares when they happen. I’m already seeing a reduction in neck tension and headaches after just one month of working with her!

Going back to my weekend wedding shifts however, as I said, the long hours on my feet have been hard on my body and due to my hEDS, it takes me longer to recover. The trouble is if I work a wedding on a Saturday, then that only leaves Sunday to get chores at home done. I can picture my old physical therapist’s eyebrow raising at the idea of claiming that I did get some rest on Sunday morning while I waited for the dew to dry off the grass so I could mow it. Yeah…doesn’t really count!

Back on the dance floor, I started another new adventure over the summer. A friend from Zumba and I started learning West Coast Swing together, with both of us learning the lead and follow parts. I’ve danced West Coast Swing a little bit socially in the past, but it wasn’t a style I dived deep into like the American Smooth ballroom dances. Once again, dance is challenging both my brain and my body, and I love it!

As we rolled into September, the schedule turned a little crazy. I’m dancing three nights a week in West Coast Swing, ballet and tap. The other two weeknights are reserved for strengthening/cross training through either exercises assigned by my hypermobility doctor or a local tabata pilates class. I worked two weekends in a row, and today is the first day in weeks that I’m actually resting and not doing any major physical activity. It’s no surprise that my knees and various other body parts ache.

When I first started working with the hypermobility doctor, I said one of my goals was to be able to dance without pain or worrying about waking up in pain the next day. I want to get to a point when dancing three or even four days a week isn’t too much. The reality is I won’t ever reach a point when I’ll be out of pain entirely. There will be good days and bad days. There will be flareups, especially in busy periods when rest is hard to make time for. But if I pay attention to my body and prepare, I can minimize the frequency of those flareups and have a toolkit at the ready to get me out of those flareups faster and back to dancing.

That was a weird truth to hear – that the pain is something I’m going to have to live with – because I have been living with it, that’s been my reality up until this point, and at the same time, I think I assumed that I’d be able to get rid of it once I finally found a doctor who could identify the root cause of the pain. I will be able to get rid of some of it, and the progress with my neck is proof of that, but it will be a constant balancing act of managing my symptoms and building up strength to support my scarecrow structure, while still living my life and dancing as much as I reasonably can.

So that’s me! I would love to hear what you’ve been up to in your dance journey. Please share in the comments!

If you need some support in your dance journey, I also invite you to check out the books and journals available in my Ko-Fi shop.

Happy dancing!