There’s a star in the sky…

What does one do when anxiety is overwhelmingly unkind to one’s systemic being?

One hides and curls up with something comfy…a blanket…a roaring fireplace…a cuppa tea…

What does one do when anxiety is overwhelmingly unkind to one’s systemic being, but you know there’s an important message you must convey to the very people who gifted the world a beautiful soul…a beautiful soul who now lights up the sky?

You suck it up and you go say goodbye.

Today was the visitation for the soul known as Rhian, @verifiedrockstar…or Shanty. Friend.

As I drove to the funeral home, I was more or less occupied with finding the place. Go, Go GPS-Ass I am not.

When I got there, I took a small moment to collect myself, try to stave off the jitters of being in a place where I would personally know NO one…and entered.

My first observation was the energy in the home…it wasn’t sad. It wasn’t sad or heavy or anything you’d expect a place of final goodbyes to be.

It was light. It was smiles. It was stories (I may have tried to listen in on a few…just to see what other sides of this glorious soul I could glean out) and memories and laughs and hugs.

I saw, to my utter astonishment, Max Keeping. Those from Ottawa will recognize this uber-stellar former TV news anchor and community hero. My first thought was to turn right around and head on out…I wasn’t worthy to participate in such an honouring.

I didn’t. I figured, at best, I would go as I came…unknown…silent…

I met her husband, Darren. I hugged him a little too tightly…I didn’t realize how much I wanted to hug a caregiver of such admiration for the Woman-Known-‘Round-The-World. I had this eloquent speechy-thingy I’d wanted to say, but it really just came out as a babble, I’m quite certain.

“I’m Brynn and I have Lupus and I knew Shanty as Rhian and……” I gushed out. I hope I didn’t look like a crazed meds-addict. (o.O)

Now it was real. People are grieving…sweet-scented floral arrangements were all around the room. In the middle, along the far wall, was her pine-coloured casket. Her photo…stunning…beautiful…LIFE.

Now it was REALLY real. I could feel it well up from the depths of my soul.

*whispers ‘don’t cry…not yet’*

I caught a glimpse of a small woman enveloped in hugs and love. I gathered this was her mother.

I drew up my breath and walked over to the line to pay my respects.

I wasn’t prepared. Nothing could have prepared me.

I introduced myself.

“My name is Brynn.”

I’d rehearsed this a hundred times earlier today…something eloquent and well-spoken and strong and precise. I had to tell her the global impact her daughter had on an entire health community.

It was hard to hear people…there were so many revelling in the memoirs of a rockstar ballerina.

“My name is Brynn and I’m a mother of five and I have lupus,” was the jumbled mess I managed to spurt out.

I wasn’t prepared.

I wasn’t prepared for her to cry as she listened to me sputter to her how important it was that she knew just how far-reaching her daughter’s impact was…that her fiery, independent, strong child stretched out her reach to people all across this spectacular blue orb in order to comfort, console and be there for the people who looked to her for guidance, spirit, courage and hope…whenever…unconditionally.

I know this to be true.

I was one of them.

I wasn’t prepared.

I wasn’t prepared to hear her thank me for coming. I wasn’t prepared to cry on her shoulder while she laid her hand on my head and held me and told me as she moved her soft, delicate hands to my cheeks, looking straight into my eyes to:

“Never give up…don’t you ever give up.”

I will not give up, you beautiful mother to an angel.

I will not.

Max asked for attention and I listened to him exude his reverence upon this woman who touched our souls. He asked if anyone had any stories or memories to please share them.

My hand was in the air. (?!?!?)

I said what I wanted her dance friends to know…her family to know…her acquaintances and co-workers and anyone else who wasn’t chronically afflicted to know…

I told them how she made a difference to people all over the world.

I know this to be true.

I was one of them.

I am also a part of a community where sharing and knowledge and hope wouldn’t exist if we didn’t have people like Rhian…like Shanty.

Without people like Rhian…like Shanty…we would be alone. People like her inspire us to reach back out…in a fluid, dynamic support system that keeps our shadows in the corners and allows us to express, to vent and then to “keep on keeping on.”

I listened to stories…memories…I looked at photos and certificates…and I learned how even MORE awesome she was.

We were allowed to write on her casket.

What message could I possibly write? How was it fair that I could be here to write, but many other chronically afflicted friends I’ve come to know cannot because they’re on the other side of the world? Friends who were just as inspired by this “Live fast, die pretty” soul?!?

So, I chose not to write something personal. I chose to write on behalf of the entire community. I added the now infamous hashtag #chronicallyawesome as a tribute not just to the “RhiArmy” movement of support and hope for her and her family…but to my own source of inspiration…I would invite you to check out the link.

RhianDearest Rhian,

It hurts me to think that at our age, life can, indeed, leave us. We are supposed to be immortal. When you died, so did a piece of my soul. It was just a small piece, because you taught me that hope and courage needed to be bigger pieces…lasting pieces…pieces that will live on long after we’re gone.

I heard so many people speaking of you today, and I came to the realization that I am, indeed, living a life of encouragement, of inspiration and of hope. I continue to share the challenges of my journey publicly with others because I know how much your record of your journey helped me in mine. While I am deeply saddened by the loss of your physical body, I know in the other pieces of the fibres of my soul that you are everywhere…in every hug…in every smile…in every new connection made because you simply existed.

Thank you for being the epitome of a chronic badass.

Thank you for keeping on, keeping on.

This world cannot contain a soul like hers. It is far too big, thus she was only allowed to be here a short while before needing to spread it out like wings across the cosmos.

If you want to see her…

…just look up.

14 responses to “There’s a star in the sky…

  1. Thank you for sharing your heart and your friend. Your story touched my soul, because in your own way, you have touched mine.

    I’ve shed tears for You tonight.

    (((hugs)))

    • That makes me believe, and provides to me the comfort, of knowing that if people could speak of me at my end of days the way they spoke of her…every moment…every tear…every piece of pain will be worth it. Thank you xoxo

  2. Thank you for attending her funeral. I know it couldn’t have been easy.
    Thank you for saying all the things that everyone I know as a ‘Spoonie’ (The Spoon Theory) would want to say to her family and her loved ones. I knew Rhi for a few years thru the bydls message boards and of course on FB – she was such a bright shining light.
    I appreciate your posting, and I’d like to share it on facebook with the Spoonie community so that they understand that ‘we’ meaning we the Chronically Awesome, the Spoonies, the Fibros, Those living for a cure, and all of the other chronic illness support communties I belong to know that we were represented in some way.
    And her mother – her mother. we now know where her beautiful soul came from.
    thank you. love, hugs, spoons.
    linda

    • I felt so strongly to put it out there…for the people *I* have never met who loved her…you truly find a new facet of someone when hearing about them through the words of others. I just hope I put enough exuberance into what she represented to the world. 🙂 Please share anywhere you feel it would help. xox

  3. Thank you. Just Thank you.

  4. Brynn I’m not sure how to properly thank you for being there. It was a true pleasure to meet you and I’m glad you spoke when I could not.
    I hope to make it back out to Ottawa before 2013 is out and a few times a year after. I would love to keep in touch.
    Your words are truly beautiful and so perfectly convey my own feelings being there and sharing in the light of this Goddess who was such a source of light, joy, love, support and inspiratall walks of life and people worldwide. Thank you.

    • I would love to keep in touch!! It means a TON…I consider it an honour and privilege to have met you in person, and I find consolation in your words that those spoken by me could articulate the magnitude of all that was “Her.” Please let me know the second you come up here again!! xoxo

  5. I wrote the piece on ABL about Rhi & wanted to make sure to give you proper credit for yours. You said a lot, and it all rang true to the heart. Now we just try to go on without her.

    • Her light will continue to burn in our hearts and on the lips of all those who loved her. I am very appreciative that you had the chance to read this, I was very touched by yours! (HUGS)

  6. Brynn, I was there. Your speech was beautiful. Rhian was like a sister to me. Without her, I’d have never met my husband, and through her have been inspired to live my life with kindness, love, and a smile on my face, despite whatever life throws at me. I can’t even begin to tell you I know how you feel, because I do not. I only know what Rhi had shared with me (and I am so thankful to have been shared-with)… but you are NOT alone. She was so loved, and so are you. You may have gone there alone, but you’ve gained a friend.

    (ahem, I just added you on facebook. I came to you after the service while you were sitting on the couch and thanked you for sharing your kind and beautiful words)

    • Oh, Kata…your love was exuding that day!! I told my husband about the both of you when got home…the love, the words, the…well, words don’t really do it justice, right? Your spirit shines and I am SO thankful to have gained a friend…it means the world to me (HUGS) and xoxo I’ll remember your face and the words that you kindly spoke to me for all of my days. Thank you. 🙂

  7. Pingback: Rebel Without A Pause, s1e12: Rhiannon - This Week in Blackness | This Week in Blackness

  8. Pingback: A voice, a walk, a community | Lupus Interrupted

Leave a Reply

Your email address will not be published. Required fields are marked *