We Are All Awkward Unicorns

Earlier this year, CMTA asked for people to organize walks all around the country for CMT awareness. “It would be so great to get Julianna out for something like this,” I thought. I knew she’d love it, but it was the same old story: stupid CMT. It was hard to even leave her room.

After she died, I contacted CMTA. “We want to walk,” I told them. We didn’t have the energy to organize it, but if someone stepped up, we would be there. We’d bring Awkward Unicorn (a Julianna surrogate?) and walk – for her, and because of her.

And it happened. Yesterday, in a park with soaring trees, we gathered for Portland’s first ever CMTA walk.

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The weather  last week was quintessential gray and rainy Pacific Northwest — but yesterday we got a break.

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We had a poncho ready for AwkUni, but didn’t need it. 

I said a few things, and learned many more:

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It takes guts to wear a tutu! (Especially if you have one…) But compared to what Julianna had to face every single minute of every day, it was nothing. 

 

Believe it or not, this was the first time we came together — in person — with the CMT community. We’ve known for years that Julianna had CMT, but didn’t think to reach out. Yes, we were very busy keeping Julianna alive, but it was more than that.

Our CMT is like a freak of nature. In two generations, it went from almost nothing (Steve) to deadly (Julianna). What does that? (We will have an answer soon – I know it). So even though we had a diagnosis, I didn’t feel that we fit in with the CMT community.

Yesterday, I met and learned of others with CMT who also don’t feel like they fit in. There are over eighty different types of CMT, and there is a wide range of severity even within the same type. Many are the first in their family to be diagnosed. So…none of us “fit in.” We are all awkward unicorns.

CMT is a frustrating disease. It’s hard to explain, hard to predict, hard to diagnose — and I say this as a neurologist and a mother who has suffered the ultimate loss because of this awful disease.  I have wanted to throw my hands up in the air many, many times. Except that it killed our daughter — so I can’t. I won’t.

My plea (to the world, but especially to the CMT community) is this: We are each other’s best hope. If we come together, we can beat this thing. If we don’t act, who will?

Whatever you can do — walk, talk, write, give, get people to give, educate, be educated, dye your hair blue — do it. Even if it feels awkward.

 

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Heavy lifting is best done TOGETHER.

Huge thanks to Ori and Debbie (and family) for all the work you did to make this walk possible.

 

 

 

Overwhelmed

It’s the only way I can describe it. The ten days since Julianna passed have been intense, and it feels like a lifetime.

It’s true what they say about the waves of grief, but it’s from an erratic ocean, one without pattern or rhythm. Sometimes the waves are massive and incapacitating. At others, they are just a trickle – a poignant memory, then an ache.

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We took J and A to the Oregon coast in spring 2014 – before her 2nd hospitalization that year. It’s the only time she got to see the ocean. She was still strong enough to be in a hiking backpack.

The ache is the hardest part. The intense pain is searing, but it goes away. It’s like throwing up – horrible, but there is relief afterwards. The ache stays and it gnaws and it drains. I can’t believe that she’s gone.

There has been comfort too. I want to share the things that comfort us, because I know that others are hurting with us.

Take comfort in this: It hurts so much because the love is so great.

It’s the price we pay for succumbing to love, and I’ll gladly pay it – a million times, over and over again. The only thing worse than the pain now is imagining a world in which Julianna had never even existed. Or wondering if I held back, left something on the table to protect my heart. I didn’t, I’m grateful,  so I’ll take the pain.

Take comfort in: the words of a child.

A few days after Julianna died, Alex said this: “You know the morning after Julianna died and Daddy was on the phone? The people on the phone were crying, and it made me feel good.”

Alex, age seven, has realized that sharing in someone’s grief is a gift. Crying tends to make people uncomfortable – but why? If you have loved and lost, there will be crying and tears. It’s not a big deal.

It is an act of love to share in someone’s grief. For us, anyway, it helps to know that Julianna was loved, and that others are sad with us. It tells us that she mattered, and that she is not forgotten.

Take comfort in….the Therapy Unicorn.

I promise to do an entry dedicated to the Tea Party. For now, let me introduce you to this guy. He’s one of the first things that people saw as they walked in.

 

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We recognized that there would be sadness at the Tea Party – and because it was Julianna’s Tea Party, a Therapy Unicorn made perfect sense.

This unicorn was a gift to Julianna from a dear family friend. He came from a truck stop. (I’m serious). Julianna met him during her last semi-good hours. He was introduced to her as a talking, face-touching unicorn.

True to form, Julianna called it:

J: That unicorn is awkward.

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This is the last picture we took of Julianna. The unicorn was a perfect TumbleForms pillow.

 

A massive pink and purple unicorn who hails from a truck stop? Yes, a little awkward. He has, however, become a comforting presence. He has mass and weight. He reminds us of her and makes us laugh at the ridiculousness of it all.

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Notes:

  • My thoughts come more randomly and quickly these days, so I’ll probably be using Instagram more. You can follow us at

    @julianna.yuri

#teaforjulianna, #loveisasuperpower, #juliannasnow

See the public Facebook event page: Tea for Julianna for posts from around the world.

 

 

Lots of new articles are out — see:  “Other Stories” tab

Lastly:

If you have been touched by Julianna in some way, please help us fight the hideous disease that took her from us. This is one of our main motivations for keeping Julianna’s story alive.

Donate here to CMTA — for Julianna

(Do you see the purple cup on the unicorn psychiatry booth? We meant it as a prop, but the Therapy Unicorn collected $4.37 from satisfied patients during the Tea Party. I told Alex he could have the money. He said: “I want to give it all to CMTA for Julianna. It’s my money, and that’s what I want to do.”)

Buy her book, “Julianna’s Adventures” — 100% of proceeds go to CMTA.

Support independent publishing: Buy this book on Lulu.