5 years and counting

Rhia almost died five years ago on Easter. After a week in the hospital she recovered from what the doctors called metabolic distress. She left weak, but alive. And she had an actual diagnosis for the first time: mitochondrial disease. The doctor didn’t know which type of mito she had, but all the symptoms pointed to some kind of illness that starved her cells of fuel. Slowly, over many years, her cells would starve to death and she herself would die.

They gave her five more years.

That was five years ago.

I spent five years preparing myself for her inevitable death.  Five more Christmas. Five more trips to Disneyland. Five more visits to New Orleans to see family. And then one day she would stop breathing, and my lovely girl would be gone.

But she’s still here, happy and thriving and very much alive. Her ataxia is worse and so is her vision. She can barely walk, even with her walker. Managing her fatigue is top priority. And she’s lost ground cognitively. But despite all predictions, she is still here. She is a friendly, stubborn, kind-hearted, and curious young woman who deals every day with her disability. It frustrates her sometimes but she never gives up. Every time she walks into the doctor’s office on her wobbly legs, it is another victory.

I was ready to say goodbye. I wasn’t ready to take care of an adult with severe disabilities. Soon she will transition into an adult day program when she ages out of the school system at age 22. That is next month!

22. No one believed she would see age 22. Not even me.

On Tuesday we go back to Stanford for her annual check-up with the geneticist and neurologist, They measure her body and track her decline; there is always a decline. And they always smile when they see her. I see the unspoken “how are you still here?” Rhia is impressive, a mystery that has puzzled her geneticist for 10 years. First he couldn’t figure out what was causing her symptoms, now he can’t figure out how she’s still alive. But he seems thrilled to see she still is.

I know I will outlive my child, but no one can tell me by how long. She could collapse tomorrow, or next month. Every time she gets sick I feel the tight panic in my chest. Is this the illness that finally saps her strength? She recovers and my fear subsides. Until she falls. Will this injury be the one that stops her from walking? She gets back up. She keeps walking. She keeps smiling. There is nothing I can do but watch and enjoy every moment I have with her.

Not to say she’s always a joy to be with. She can be impossible! Stubborn and quick to frustrate, she can yell, hit, kick, and throw things. But she is just as quick to apologize and make amends. She’ll pick you a flower or draw you a picture. When you’re sad, she’s the first with a hug. She tells the most ridiculous, surreal jokes and laughs at her own wit. She sings in the car and the bathtub. And she always makes you feel like you are in the presence of a miracle.

I know we’ll say goodbye one day. But right now, I’m going to watch Snow White for the hundredth time with my fabulous daughter.

 

Wanted: The perfect program for a highly social, deaf-blind, medically fragile, young woman.

Last week, I attended my daughter’s very last IEP meeting. Rhia turns 22 in May, which means she will no longer qualify for school based services. Instead, she will be a full fledged, 100% adult, with all the challenges and opportunities that provides. I sat beside her at the the meeting, surrounded by people who have been a part of her life since elementary school. Her current teacher used to be her aid in the 4th grade. Now he led the meeting that would transition her into adulthood.

Fighting back tears, I stated my concerns. Who will be her Sign Language interpreter? How will she continue to learn ASL? Which program will provide the most flexibility while still providing social opportunity so she can make friends? How will we fight the isolation that comes when a person is deaf-blind and uses a wheelchair to travel?

No one knew the answers. Everyone was worried and everyone tried hard to come up with solutions. But what I really wanted was someone to take charge with their magic wand and create the perfect program for my daughter. Unfortunately, no one had a wand.

It’s not that I didn’t know this day would come; her IEP team and I have been discussing it since the 8th grade. Transition is a big deal so it takes years to plan. The problem is that my daughter is medically fragile and has serious communication challenges. We live in a tiny town with limited opportunities. We really need to move to Berkeley or Santa Rosa, but who can afford the rent? So here we are, Smallville California, hoping the perfect program for my Disney loving, shy, cheerful daughter will appear.

Rhia keeps asking me what will happen when school ends. I tell her she’ll go into a different program for grown-ups. She’ll make new friends and maybe take classes at college again. She scrunches up her brows and looks at me sideways, not sure if I’m telling the truth. But I am; I’m telling her what I hope will happen. When I ask her what she wants she says she doesn’t know, but she’d like to move to “LA” so we can go to Disneyland everyday. Darling, if I could, I would, but I can only afford to live in a tiny town in NorCal where the adult programs are geared toward work and very few people know ASL.

I really need Godmother’s wand!

Shhhh… speakeasy and I’ll tell you a secret

speakeasy

In the mood to time travel? I know a place, hidden away in a basement near China Town, where it’s always 1923. The stories are hot and the gin won’t make you go blind. But you have to know the password to go there.

the-speakeasy-sf

 

 

The Speakeasy is an immersive play where you can wander different environments (a saloon, a casino, a cabaret and three secret places) to watch several interweaving stories taking place amongst the staff of a 1920’s speakeasy. Pick a story and follow the characters from room to room, or stay in one environment and see all the characters wander through.

singer

I chose to mix it up, following a character for a while then exploring another room to pick up threads of different stories. I began with a mother and father hunting for the girl their son had loved; he had been killed during the Great War. Then I followed a man with a gambling problem into the casino and tried my own luck at craps. Turns out I’m pretty good. When a loud, obviously intoxicated woman dressed in  flapper attire yelled at the gambling man for abandoning his children, I followed her out the door and into the cabaret. Finding a seat near the stage, I watched the performances. They reminded me of something I’d seen in a 1930’s movie, complete with live music and dancers in red sequins tap dancing.

The-Speakeasy.-Freddie-Larson-as-Vinnie-3.-Photo-by-Peter-Liu

A big man who was obviously the boss and dressed like a wealthy gangster asked me if I was having a good time. Deciding to follow him for a bit, I listened in on a “private” conversation about “supplies.” I ended my evening back in the cabaret where I watched a love story unfold between one of the Speakeasy’s guards and a dancer. I can’t tell you the ending of the show, but lets just say it was surprising yet appropriate for Prohibition.

The-Speakeasy-2-photo-by-Peter-Liu-copy

I have a passion for the 1920’s and 30’s. The Speakeasy surpassed my expectations with the costuming, acting, decorations, and stories. I really felt that I was in a different time surrounded by real people, not actors. Even if you’re not a Deco/Flapper/Gatsby fan, you need to experience this theatrical event; there’s nothing like it.

little girl in bar

 

However, there are rules you need to follow if you decide to go. Wear appropriate clothing. You don’t have to go in costume, but you do need to dress up as if you’re going to a fancy cocktail party. No technology! They didn’t have cell phones in 1923. And be quiet, or if you must speak, speak softly. There’s a reason it’s called a speakeasy.

Click the link to buy your ticket and learn the secret password. I promise, you won’t be disappointed.

(images from The Speakeasy)

 

 

I’m giving up fear for Lent

theparisreview1

image from Tin House

Hidden away in a large plastic bin are years of my writing; poems, plays, short stories, articles, essays… even a finished book-length manuscript. Why are they stored in a bin and buried in my bedroom?

Because I am terrified of rejection.

I used to send my work out, but after twenty-five rejection letters I quit. I couldn’t take the disappointment and depression any more. Every rejection felt like a rejection of me, not my writing. I was the loser who poured her soul into every word only to have all that work stomped on by a heartless editor. My writing was worthless, therefore I was worthless.

My ego became intertwined with my writing. How can it not? Writing comes from the heart; it makes you vulnerable. You have to open a vein into your inner core and let the creativity pour out. No wonder every rejection letter felt like a rejection of my soul. I was just another girl who thought she could write like the millions of others who think they can write. I’m not special. I don’t matter and neither does my writing.

Vulnerability turned to depression and depression became fear. Never wanting to feel that much misery again, I put my writing in a plastic bin and shoved it behind my bed.

The other day, someone asked me what I was giving up for Lent. Not being a Christian, I just shrugged and said, “candy.” But what actually is Lent? And why should you give something up to celebrate?

According to The Upper Room, Lent is the season of the Christian year when Christians focus on simple living, fasting and prayer to grow closer to God. For 40 days, the length of time Jesus wandered in the desert alone, Christians let go of material things and focus on their spirit. For this ritual to work you have to give up something you really love, or are really attached to.

I am absolutely attached to fear. Perhaps this is a blasphemous way of observing a holy tradition, but as I said, I’m not Christian. However, I do believe ritual and symbols are important and that reconnecting to our sense of spirit is vital. Making a commitment to something greater than ourselves makes us better humans. Some people find that in religion. I find it in creativity.

For the next forty days I will submit my writing. Every day, I will send one piece of my work out into the world and will not think about whether or not it is accepted. Acceptance isn’t the goal, getting over fear is. And I will do this in the spirit of Lent. I am letting go of ego and sharing my work with anyone who may find it beneficial. I am strengthening my creativity and weakening the inner critic who tells me I’m worthless. And if I get 40 rejections, so be it. I’ll decoupage them and make a gorgeous collage.

 

 

Bury My Heart at Standing Rock

mordant-standingrock-01

images from North Country Public Radio

When I heard the news, I cried.

After a year of peaceful protest, millions of supporters, veterans providing protection, celebrities raising awarenes, and Native Tribes from all over the world joining together to fight for clean water, the oil company won. The North Dakota Access Pipeline is being built as I write this and there isn’t a damn thing we can do about it.

youngmanpolice

Image from Democracy Now

Does money always win?

When I saw the police rolling in on miliatary style troop carriers to surround the Oceti Sakowin camp, complete with riot gear and assault rifles, I cried. How many times in our history have Native People faced this exact situation?

nationalguardteepee

Image from Voice of America

All the People wanted was clean water. That’s it. They didn’t want to annex the land back to the reservation or build a casino or anything more than a guarantee that they and their grandchildren would have clean water to drink. Clean water. One of the basic requirements of survival.

And now there’s no guarantee they’ll have clean water next year.

regina-brave

Image from Native News Online

I feel powerless, angry and sad. I sent money to help the Water Protectors buy supplies for winter and then more money to hire lawyers. Thousands of people did the same. But none of us have enough power or wealth to fight oil companies and protect clean water.

Then I saw this: https://twitter.com/the_orangeidiot/status/834590610644402177  This the final message from Raymond Kingfisher, leader of the Cheyenne People and of Oceti Sacowin Camp. With tears in his eyes and a voice filled with emotion, he led the final prayers and thanked everyone for their support. He also promised that the fight wasn’t over.

raymondkingfisher

Image from WhiteWolfPack.com

This powerful video recorded on the last day of the protest shook me. If these people can walk away peacefully and proclaim the battle isn’t over, then so can I. If they can face that stark grief but still have hope, then so can I.

I will fight for people with disabilities, for equality, for compassion, for freedom of the press and of speech. I will fight for healthcare and education. And yes, for clean water.

raisedfists

Image from CNN

I will fight for the welfare of future generations, just as the tribes at Standing Rock did.

Here is another powerful report from the last days of  Oceti Sacowin Camp from Intercept, by Jihan Hafiz: https://theintercept.com/2017/02/25/video-a-closing-prayer-for-standing-rocks-oceti-sakowin/

And here is how you can help the battle:https://medium.com/@ShaunKing/please-support-these-5-standing-rock-legal-defense-funds-to-stop-the-dakota-access-pipeline-754be4674ec2#.b6nzwtxnh  (thank you Shaun King for putting this list together)

To my first love, Richard Hatch

RICHARD HATCH

Richard Hatch died yesterday of pancreatic cancer. He was 71. Reading the news, I felt as if I’d lost my first, dearest love. In a way I had. I have loved Richard Hatch since I first saw him on Battlestar Galactica when I was 11 years old in 1978. From the moment I saw his smile and those hazel-green eyes I was madly in love, and I stayed in love for the rest of my life. I’m not sure why, but there was something about his voice and those cheekbones that made my heart beat wilder than anyone else on the planet, even Johnny Depp.

While other girls decorated their lockers in Middle School with pictures of Scott Baio and Leif Garrison, I plastered mine with a collage of Richard Hatch. Richard in his Battlestar costume. Richard playing the guitar. Richard looking serious with his dark hair in a center part. Richard in a scene from The Streets of San Francisco. I collected everything I could find about him and kept all the clippings in a secret scrap book. My infatuation didn’t end; even after I graduated high school and went to college, I worshipped Richard Hatch. When I was 20, a jealous boyfriend found my scrap book and burned it. That relationship died, but my love for Richard remained steadfast.

b-and-w-richard

One day when I was living in San Francisco in 1991, I saw an add for an acting workshop taught by non-other than Richard Hatch. I stole the flyer and called the number to sign up, spending the last of my grocery money that month to be in the same room with my first true love. Then I spent the next two weeks trying to decide what to wear.

At last the day came. Wearing a green sweater, a jean mini-skirt, black tights and my Doc Martin boots, I entered the room and instantly hated my outfit. There he was, Richard Hatch. He wore faded blue jeans and a light blue, button-down shirt with the cuffs rolled up, revealing his beautiful forearms. Oh god, don’t stare at his forearms! He smiled and nodded as I walked in and I quietly found a seat on one of the folding chairs at the front of the room. Why am I the first person in the room? Thankfully more people entered, but I wished I’d actually said something rather than just staring at my feet.

richard

There were about 20 students and the class began with a short introduction. Richard explained the class was about finding your own, inner strength and talent to make you a better actor. We all introduced ourselves and when it was my turn I thankfully remembered my own name and said I was studying drama at San Francisco State. After introductions we formed a circle for warm ups and spontaneity exercises. There were more getting-to-know-you exercises, including one that required us to say the first thing that came to mind about the person directly across from us.

Paralyzed, I mumbled responses, growing more frightened as time went by. I can’t move in front of Richard Hatch!  I might faint in front of Richard Hatch! Does he know? Does he understand how badly I want to have his children? Oh my god I want to touch him! No, don’t touch him! That would be creepy. Don’t be creepy. Don’t look at him. Oh no, he wants me to look at him. He’s asking me a question. 

richard-and-cat

“Sorry?” I asked.

“This seems like a challenging exercise for you, Terena.”

Oh my god he said my name! Richard Hatch knows my name! “I’m just a little nervous.”

“It’s okay. Everyone feels nervous sometimes. So this is what I want you to do.” He moved into the center of the circle and gestured for me to join him. Slowly I moved and stood beside him. Putting his hands on my shoulders, he said “Close your eyes.”

Richard Hatch is touching me! I closed my eyes and he gently spun me three times. Then he let go and said, “Put out your arm and point. Keep your eyes closed.”I did what he said. I would have jumped out the window if he said to. After a moment he said, “Now, spin once on your own, stop, open your eyes and say the first thing that comes to mind about the person you’re pointing at. Don’t second guess yourself, just do it.”

Taking a deep breath, I spun around and then opened my eyes. I was pointing directly at him. Dropping my arm, I just stared at him in horror. A few people laughed and one person said, “Come on. You can do it.”

Richard smiled kindly. “What do you want to say?”

“I’ve been in love with you since I was eleven years old!” I said loudly.

There was a pause, then the entire room cheered.

Richard blushed and grinned. “Now that took guts,” he said. We both laughed and he gestured that I should rejoin the circle. The ice had broken. Finally relaxed, I enjoyed the rest of the class and learned quite a lot about improvisation and trusting my acting instincts.

However, after class I gave him one of the awful, passionate poems I wrote in high school about him. I wish I hadn’t. He probably thought I was the weirdest stalker he’d ever met. Oh well, at least he knew my name.

Goodbye Richard. You will always have my heart.

richard_hatch-older

50

Today is my 50th birthday.

Last night I tried staying up past midnight to watch my 40’s disappear, as if being awake for the event would make it more believable.  But I fell asleep and when I awoke a whole new decade of my life had begun. 50. Half way, or maybe more than half. Do I really want to live to see 100?

My daughter has been sick with pneumonia and had to be hospitalized. Rather than getting  a massage and a manicure as I’d planned this past week, I spent several days by her hospital bed. Nothing mattered to me outside that room. On Tuesday I forced myself to go to work because I had a deadline, but I left early and rushed back to sit with her in that little room. When she was well enough to go home, I began round the clock home care, which included waking up at 3 AM to administer a dose of antibiotics. I didn’t care about sleep; I just wanted my daughter well again.

And then came my birthday.

I hadn’t wanted a party; going to the March on Washington was my party. But sleep was necessary. So on this first night of my 50’s, I am in a hotel room just a mile from my house (just in case…) so I can sleep and write and sleep some more. I used to be able to manage on 4 hours of sleep a night for months. Now, I can’t get through a day on less than 6. I must be 50.

My 40’s kicked my butt! I feel beat up and worn out and then left in the sun too long. I feel year after year of stress in my bones. Will my 50’s be more of the same?

The odd thing is I feel excited about a new decade. It feels like a new book in a series. The old book is done and now I start a new adventure. I’ve never been this age before. And I feel such freedom and relief, because I don’t care so much what other’s think. I’m not worried about making people happy or wondering if I’m doing something wrong. Other people’s opinions matter less than ever, which makes me feel strong. I know what is right for me. I still struggle and have a lot to learn to be myself, but at least I finally know who that person is.

Plus, it’s raining on my birthday. It hasn’t rained on my birthday in many years. When I was a child it rained every year and then sometime in my 20’s I realized my birthday wasn’t in Winter anymore. But today, it is cold and gray and damp, just the way I like it.

Rain is a good sign, and my daughter is getting stronger. Now to sleep and dream and regain some strength. It’s a whole new decade to explore.

Good night.