Trying Trust

I am a worrier. I need to plan, organize and anticipate at least three possible outcomes for every scenario. So taking a leap of faith is as natural to me as jumping off a skyscraper because I think there might possibly be a rescue net somewhere down there. Never gonna happen.

Until now.

Three weeks ago, I was sitting with a friend sipping a glass of wine at her lovely home while trying to figure out what to do with my life. I was getting divorced, my intended job wasn’t returning my phone calls and getting my daughter the health care she needed felt impossible. I admitted I’d thought about moving back to the Bay Area but feared I couldn’t afford rent.

“My friend has a house for rent,” she said.

“I doubt I can afford it,” I answered.

“Want to see it just in case?”

I shrugged. Why not?

The next day she brought me to a lovely, Italian inspired house with white stucco walls and a red tile roof. Opening the door, she led me inside. My heart melted; it felt like home. The house glowed with sunshine and 1930’s charm. The halls were wide enough for Rhia’s wheelchair to glide through and the view of the bay inspired daydreaming. It was the perfect place to heal a broken heart.

That night, I made a deal with the universe: if my job refused to give me the hours I needed I would apply for the house. Two days later, my job refused. So the following weekend, I met the landlord. And just like that, I had rented a house on the San Francisco Peninsula. Then a few days later, I interviewed for my dream job and that afternoon they hired me. Two weeks later I started school for my second credential while also beginning the process of transferring all of Rhia’s care to a new county.

I don’t know how the transition will go; I don’t have all the information! The paperwork and phone calls and future meetings are overwhelming. But I have to trust that it will work out. Just as I trusted I could afford the house. I found a job that pays the bills, and not only that, it’s a job I love. I’ll be broke for a while, but in time, we’ll find our balance again. Together, Rhia and I can afford our dream house in the wealthy hills of Belmont. We can do it because the landlord is trusting us too.

Rick and I have decided to sell our current home in Ukiah. The new house has an attached studio apartment where he’ll live this winter. He’ll be nearby to help with Rhia and support her transition. She has spent most of her life in Ukiah; this is the house she grew up in and all of her friends are here. The support team the three of us developed over 20 years is here. Who will help Rhia in San Mateo? What kind of support team will be waiting for her in a city? Will her needs be met? Or will she struggle?

This entire transition requires more trust than I’ve thought possible.

This isn’t me! I need to verify and quantify and balance all the pros and cons before making a decision. Who is this woman leaping into the unknown and trusting she and her kid will land safely?

I don’t know, but I like her.

Caregiving with Mars

mars-7-21-2018-Dennis-Chabot-e1532244737900

(Image from EarthSky http://earthsky.org/astronomy-essentials/why-is-mars-sometimes-bright-and-sometimes-faint )

At 2 AM Rhia calls me again. “Mom! I’m tangled in my blankets!”

Dragging myself out of bed, I groan and yell, “Coming!” Why do I yell? She can’t hear me, she’s deaf! This will be the fourth trip I’ve made to her room since 10 PM and I’m exhausted. I shouldn’t have made my bed so comfy because it makes it even harder to leave it.

Glancing to the window, I see a brilliant red spot in the sky, visible within the gap between my blinds and the window frame. What the …? I lower the blinds a little to see more of the sky. The red glow is huge and I think it must be a helicopter. No, it’s not moving. The orange light shimmers like a star and there are lines of clear light emanating outward, reminding me of how the Christmas star looks in movies.

“Mom!” my daughter yells again.

I dash to her room, disentangle her legs from the bed sheets, fluff her pillow, get her a drink of water, and kiss her forehead as she murmurs “Thank you” and then drifts to sleep.  When I return to my bedroom, the orange light is still there.

It must be a planet, I think. It’s orange, so could be Mars, but I’ve never seen Mars that bright! Jupiter? Then I remember the astronomy app on my phone. After the app loads, I point my phone to the sky and the program centers on that glowing orange star.

Mars.

Mars in her most glorious brilliance as she moves closer to the Earth. The app reports that Mars is making it’s closest approach to Earth in fifteen years and the viewing will be excellent. In fact, Mars will move even closer later in the month.

I stand in the darkness of my room and stare at gleaming, golden-orange Mars and smile. It is so beautiful. If Rhia hadn’t dragged me out of bed again I would have missed it. Not that I’m thrilled to lose more sleep, but I’m grateful she woke me up at this particular moment. Leaving the blind lowered, I crawl back into bed where I discover I can still see Mars from my pillow. I drift back to sleep with that beautiful image filling my dreams.

Good night…

The Day Rhia Declared She Can’t be a Princess Anymore.

I found Rhia crying in her room.

“Sweetie,” I said, taking her in my arms. “What’s wrong?”

“I can’t be a princess anymore,” she said.

“Of course you’re a princess. Why do you think you’re not?”

“Because I can’t walk anymore and princesses don’t have ataxia! Have you ever seen a princess with ataxia? No!” She buried her face in my chest and cried harder.

I wanted to cry, too. Damnit, why does this have to be so hard for her? Why does she have to keep losing ground a little bit every day? If she has to be blind and deaf, why does she have to notice how all her friends are grown up and living there own lives while she gets weaker and has to stay home? What the hell do I say to her?

Rhia is passionate about Disney, especially the princesses. Cinderella is a personal friend and Rapunzel was at her recent birthday party. She wrote them all a letter and they wrote back. When we go to Disneyland, all she wants to do is talk to the princesses.

“They remember me!” she declares. And a few do. Over the years, we’ve met the same actresses who surprisingly remember Rhia out of the thousands of kids they see each day. There’s just something magical about Rhia, something that draws people to her. Plus, she has a gorgeous wheelchair with flower-print wheel rims. Rhia plays with her princess dolls every day and talks to them as if they are alive; her imaginary friends are her closest friends.

But on this day, those imaginary friends failed her.

“Listen to me,” I said, urging her to look up at me; she has to look at me to see me sign. “You are a princess now and always. Cinderella herself said you are a real princess and you have the certificate to prove it!”

“But that was before…”

“No. Once a princess, always a princess.”

“But I can’t walk any more.”

“So what? Cinderella didn’t say you were a princess because you can walk. She said you’re a princess because you’re kind and smart and funny. You care about people and are a good friend. You are helpful and creative. And you love to sing.”

Rhia had stopped crying and was listening, but still didn’t look convinced. “But I’ve never seen a princess with ataxia.”

“I know baby, and I’m sorry about that. I’m so sorry everything is really hard for you now. You are a princess because you are strong and try hard. All princesses are strong. You are a princess forever!” I hugged her tighter.

She sighed, turned away from me, and picked up her Ariel doll. I kissed her head and left her to think about what I had said. I overheard her ask her doll, “Do you think I’m a princess?”

I prayed somehow that doll said yes.

Who Chooses Your Label?

I was chatting with a man who has multiple disabilities, when he suddenly said, “What’s up with the whole person-first thing? Why am I called a man with disabilities instead of a disabled man?”

“Do you want to be labelled a disabled man?” I asked.

“Why not. I am.”

“But isn’t that putting your disability ahead of who you are?”

He scowled. “My disability is who I am. I’m not ashamed of it. Are you?”

“No. But we wanted to make sure people with disabilities…”

“Disabled people.”

I continued, “… were seen as people who are equal to others.”

“We, meaning the allies.”

Nodding, I said, “Yes. We allies.”

He said, “Look, I know you allies mean well, but shouldn’t we disabled people decide what we want to be called?”

He was right.

How often do we allies decide the labels we give to others?

This conversation made me think of the labels used in the LGBTQ community. What do he labels Bi-sexual and Pan-sexual mean? What’s the difference? If you love someone other than your own gender you’re Gay, unless you’re a woman, then you’re a Lesbian. If you love both genders then you’re Bi-sexual, but where does Pan-sexual fit? Transexual, transgender… who decides what you’re called? Labels are vehemently debated and discussed in the queer community, but how are they discussed in the disability community?

What are my own labels and who gave them to me?  White. Woman. Middle-Class. College educated. Mother. Middle-Aged. Teacher. Writer. Celiac. Feminist.

Ally.

Labels have meaning, which gives them power. Therefore, people should decide for themselves what label they claim. If my friend wants to be referred to as a “disabled man” then that is his right. Another person may want to be a “person with disabilities”. That is their right. An ally should respect the choices of the individual, otherwise can we really label ourselves allies?

 

How can I help?

I am blessed with great friends who want to help. They send me notes on bad days and funny messages on Facebook. They text me a cyber hug. “How can I help?” they ask. They know how hard it can be to be a full time caregiver of an adult child. “Please, let me know what I can do.” But the answer isn’t that simple.

How can they help me with my daughter’s emotional distress as she loses her ability to walk?

How can they help me understand her on the days her speech is incomprehensible?

How can they help me interpret the world so she understands what is happening?

How can they help me when she has a meltdown in the grocery store and we have to leave?

How can they help me manage her day to maximize her energy and physical abilities, which change constantly?

How can they help me when she’s so lonely she cries because she misses her cousins?

How can they help me when I’m exhausted and in pain and need to rest my worn out body but she needs help in the middle of the night with a dizzy spell?

The problem isn’t the day to day stuff, like bills and errands. Sure, it would be great to have extra help putting gas in the car and cooking dinner. But those are the ordinary things that actually help me cope. Ordinary things, like laundry and gardening, cleaning the floor, organizing the pantry, and dusting help me stay grounded. The extraordinary things, like dealing with Social Security and Medi-Cal and my daughter’s inability to dress herself anymore, are the things that overwhelm me. But those are the things others can’t help me with.

So how do I answer “How can I help?” I do need help, but I don’t know how to specify  any more than I can figure out how to stop Rhia’s tremors. But if you have an idea, let me know.

Because right now, I’m emotionally overwhelmed supporting my daughter as she loses more physical and mental skills. I can’t figure out how to help myself.

Spring Creativity

 

In the dark, cold winter, I write hundreds of pages of bad prose. This is my time to take creative risks. Are any of these electronic pages worth printing, or do I hit “delete.” It doesn’t matter. The writing is important, not the outcome. I delete more than I share.

But now it’s Spring. Time to focus.

Each scene I wrote, character I created and the dialogue I made them say must be evaluated with clear eyes. I look at the pages I wrote for the memoir and wonder how much is self-indulgant. Will any of these words matter to anyone else? Who am I writing for, me or my imaginary reader? Who is that person? What do they need to hear?

Delete… delete… delete… keep…delete…

It is also time to submit work rather than burying it on my desk because I think it’s not ready. Bullshit. I never think my work is ready, but it’s certainly good enough to share. After reading submission guidelines I choose the best theaters looking for new plays and send. No more hibernating with my insecurity.

Spring sunshine warms my hands as I type. Birds gather in the trees to compete for the loudest singer. I imagine my characters laughing as they stretch and wait for direction from me. What shall I have them do? What will I delete? How much will I share, and how much will I buy?

In the Spring, it is time to refocus and let creativity flow as richly as the sap in the blossoming trees.

No matter what you believe, the moon has magic

January 31st. I am standing on my deck at 1 AM staring at the clear, full moon that looks as if it is balancing on the tip of my neighbor’s  giant redwood tree. No wind, no cars, nothing but silence and bright, white light turning the dark sky indigo. I can’t sleep. The moon has called me.

Lunar_eclipse_Jan_31_2018_REVISED

image from Griffith Observatory 

I went to bed before the moon turned red and the eclipse began, but I saw thousands of images of that glorious moon when I woke up. The whole world was fascinated with the incredible coincidence of a blue moon turning into a red moon while an eclipse happened. What could it mean? What sort of magic could it be? Or warning?

Tibetan Buddhists believe anything you do during an eclipse, good or bad, will be magnified ten-fold. Many Native American tribes believe that the moon controls and regulates the planet, so a lunar eclipse is a sign of a transformation on Earth. Traditional Hinduism believes a lunar or solar eclipse is bad luck because good things only happen when there is light. Temples are closed and people are advised not to eat anything for 9 hours leading up to an eclipse. Many Muslims say a special prayer for Allah’s blessing because an eclipse is a reminder of his power. Many tribes in Africa believe an eclipse is a good time to come together and end old feuds while the sun and the moon are busy fighting. Whether you pray, or leave your crystals out in the moonlight to recharge them, a lunar eclipse and a full, blood moon, are powerful symbols.

For me, the eclipse of a blue/blood moon is a reminder of the beauty of the universe that we are a part of it. Our planet is one piece of a vast solar system. We are circling a star with our companion the moon, joined by other planets, all connected with gravity. You and I and everything else on this planet is a part of that. And we are the lucky creatures who can stare out at the moon on a cloudless night and wonder. If other creatures are also struck by the beauty of it all, they don’t tell us their stories. But we humans create stories and draw pictures and share photos on the internet in a collective “wow!”

Perhaps that understanding is what makes people go crazy during a full moon. Ask any nurse, the ER’s are full and the patients are restless. Bartenders report more fights and Police Officers respond to more calls. Do some people see the moon as a reminder of how insignificant we are? If we are tiny and alone in the universe then nothing matters. Might as well get drunk and punch a stranger.

And maybe all this obsession over the moon is “boring”, as Neil DeGrasse Tyson says. 

“Blue” moons (the second full moon in a calendar month) occur, on average, every two and a half to three years. An event more frequent than the Summer Olympics. But nobody ever declares “Watch out for a rare Olympics coming up!” 

Okay, so a blue moon with a blood moon and an eclipse are nothing to get too excited about. But this non-physics professor still gets excited when looking up at the stars. I love the idea that we are a tiny part of a vast universe. I don’t feel insignificant. I feel alive!