Acceptance: From Center Stage to Centered Self

Trying to accept life with grief and chronic illness is like learning to breathe underwater – everything in you resists, and yet somehow, you have to adapt to survive.

Acceptance. This is my new practice. Encouraged by my witty and awesome therapist who always gives me the raw truth – I think of her wisdom like a gentle slap in the face – the impact wakes me up, and the sting leaves me feeling invigorated.

I was a ballet dancer who performed in musical theater throughout my life and well into my 30s. Dance was my way of being in the world – expressing myself through movement, play, and, most importantly, creating magic with people I’d only just met. The discovery of what the creative process brings alive in you is indescribable. It’s a rush – not just the mastery and performance, but the unique connection with fellow performers. That feeling, I imagine, is what drives many creatives to keep going, even when they’ve become disenchanted with the people or the process, and the work starts to feel obligatory.

I wish I’d had that choice. Yes, I’d become disillusioned with the constant “What are you in now?” and the praise-hungry energy that sometimes surrounds the arts, but the real reason I stopped creating was because of chronic illness.

I have a condition called Ehlers-Danlos Syndrome (EDS). It’s a complex, connective tissue disease marked by joint hypermobility, tissue fragility, and all the not-so-wonderful things that come along with it – think dislocating a rib just by rolling over in bed, or your neck vertebrae slipping after unloading the dishwasher, or spontaneous muscle tears and organ prolapses just from going about your regular day. I could go on about how EDS has changed my life, but today, I’m here to talk about acceptance.

Not just for the challenges of living with this condition, but also for the other painful things I’ve been grieving lately – like the deaths of my brother and my best friend’s father who was a father figure to me, and my cat.

If you ask me today, this is what acceptance looks like:

It looks like taping my hands to avoid muscle strains so I can play the ukulele, an instrument I’ve just started learning.

It looks like planning a trip and being okay with spending top dollar for a hotel room that offers safety, comfort, and minimizes my risk of injury or a sleepless night.

It looks like having cautious but joyful, intimacy with my partner – knowing I may come out of it with a dislocation.

It looks like openly sharing with people that I have a disability and need accommodations.

It looks like stopping the recurring thought that I could have somehow prevented my brother’s death – accepting that what happened to him isn’t fair and I cannot control this reality.

It looks like owning who I am and beginning a new chapter, instead of trying so hard to rewrite the ones that came before, especially the toxic, gaslighting family dynamics. The rest? Pretty wonderful – my marriage to my ex-husband, a great career both in the office and on stage, and a strong sense of who I was in the world.

It looks like saying: “Hey world! What do I want to do now that those people who wish me harm – and all the old feelings and habits that came with them – are in the rearview mirror?” It’s about focusing on the road ahead and enjoying the journey of getting there.

Acceptance looks like being happy with my body and grateful for what I can do: using my analytical skills and compassion to coach people to live meaningful lives, be great leaders, and manage conflict well; spending quality time with my partner and friends; traveling (with lots of planning – but yes, it’s possible!); walking in the redwoods; doing the exercises and treatments with my EDS specialist – no easy feat, but I’m making progress!; going to concerts and dinner with friends (advance calls to venues about chairs and layout make a world of difference); writing this post.

It looks like seeing myself and the world through a new lens – one that highlights the best of me: brains, beauty (hard to write that, but I’m doing it in service of the practice of acceptance), a warm and kind heart, and doing a lot of good in the world. I am doing the absolute best I can.

It looks like finally doing the things I’ve been saying I want to do – even if EDS, or grief, or age, or doubt has been holding me back. Yes, this includes writing this post.

I see myself for who I really am – not a washed-up, unfulfilled 48-year-old woman, but a highly analytical creative who is fun, charming, rebellious (but great at pretending to play by the rules), playful, loving, kind – and a litany of contradictions.

There’s probably more to say, but the bottom line is this: much of this has been hidden from me. Chronic illness, grief, and hiding out during a pandemic can do that to you. I was starting to believe in the new identity of a middle-aged has-been, someone whose best years were behind her. That memories would be my only joy-makers. It brings tears to my eyes to write that.

I want to see myself with the same hope, sparkle, and motivation I had in the first half of my life. The difference now is that back then, it was all about what I would conquer next – the thrill of achievement. Today, it’s about how I approach things and the quality of my days. It’s about loving and living fully without waiting for the other shoe to drop. It’s about accepting the painful truths the universe has shown me: there is no cure for EDS. I will never see my brother again in this lifetime. I was not born into a different family.

BUT – I can experiment with joy. I can, and have, built a chosen family that loves and accepts me for who I am. I can be grateful for the 47 years I had with my brother. Same feel, different format.

As a creative at heart, I’m always reinventing myself – through my work as a coach, my way of seeing the world, fashion, performance, writing and more. Maybe the life I have is exactly as it’s meant to be – one that keeps me on my toes, invites me to learn and grow in extraordinary ways, and challenges me to stay true to my authentic self.

Someone recently told me that my life reminded them of the Hero’s Journey. Maybe what makes me extraordinary isn’t my accomplishments or living up to some old vision I had for my life. Maybe it’s the belief that love, compassion, and resilience are the most beautiful things we can hope to embody. The belief that if we live true to who we are, we cannot go wrong; even when we have lost our way, that deep knowing we have about ourselves shines the light that helps us find our way.

I’d like to think I’ve learned the life lessons I was meant to; I am so ready to move on, but I know that’s not how it works. My work now is not just knowing who I am but settling into – and owning – all of me, even the parts I keep wishing I could change.

Maybe that’s the secret. Maybe the question is: What would happen if I let go of wishing my life were different? What would I be doing right now if I didn’t have EDS, if I came from the most loving family, if everyone I loved was alive and happy?

I have a feeling the answers hold the key to acceptance. My intention now is to experiment in these answers and be open – I may just surprise myself.

The Petite Rebel

Live fully. Be bold.

The Petite Rebel is a lifestyle blog about living authentically with courage and resilience.