Terena Scott's Blog, page 8

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?

 

Know Your Options for Senior Care from Afar, a Guest Post by Claire Wentz

[image error]

Photo by Pixabay

Claire Wentz is the author of the upcoming book Caring From Afar: A Comprehensive Guide for Long Distance Senior Caregivers. For more information, go to her website.

When you have a senior parent who lives in another state, taking care of her can be especially difficult. But there are ways to stay in touch and keep a watchful eye over your elderly loved one with the help of technology.

According to Redfin, there are five main options for downsizing seniors: buying a smaller house or condo, renting a smaller home, moving in with a loved one, moving into a retirement community, and entering assisted living. If you’re considering putting your elderly parent or grandparent into more permanent care, here is a little more about those options:

Assisted living is an apartment-style facility in which seniors can live mostly independently but they might require help with daily living tasks, such as cooking, dressing themselves or taking their medication. They might also require help with transportation. Assisted living facilities provide these services.

Skilled nursing facilities are more like what traditionally were called nursing homes. They are for people who need around-the-clock care, and they may be temporary for rehabilitation or for long-term care.

Memory care can be in an assisted living facility or in a facility with more intensive nursing care. Memory care units are designed specifically for people with dementia, Alzheimer’s disease or other memory conditions.

If your loved one is aging in place, an amazing amount of new tech gadgets is likely to help her do so.

Electronic pill dispensers — If your mom has trouble remembering which pills to take and when (it can be very confusing!), you can get one of these nifty devices. You can load the dispenser and program it so that she can know when to take her pills. Some can even record a voice telling her when it’s time to take her pills so that she hears it from someone she loves. Some dispensers even connect with her pharmacist who can monitor her medication use.
Emergency call buttons — These have been around since the 1980s, but these days, they’re much more sophisticated. They can use gps systems so that your loved one can run her errands and visit her friends. If something happens, she can summon help without even knowing where she is. There are some systems that can tell when the user has fallen, so that if she’s unable to ask for help, she can still get it.
Tablets for seniors — Your mom doesn’t even need to understand how a computer works. Simple-to-use systems can make it easy for her to video chat with you and your family, and it can monitor her movements and medical care.
GPS-enabled shoes — This is a real gadget that can help you keep track of your loved one if she wanders off. Even if she just doesn’t get home when you think she should, you can check on her.
Easy cell phones — Not all cell phones are “smart.” Some people just want a phone they can use easily. Some carriers have simple phones with large buttons and large screen fonts so that elderly users can access them.
Health monitoring apps — Your mom can go to the doctor, and her doctor will put all of her information in an app so that she (or you) can access it from anywhere. This way you won’t be dependent on her memory of how the visit went, and you can communicate with her doctor any time by sending emails. The systems will alert the user when it’s time for vaccinations or blood work, and you can make sure she gets to her appointments.

We live in a great time to be a senior in the United States. The technology industry comes up with new and exciting options every day to make our lives easier. But most importantly — don’t forget to call your mother.

Caregiver or Mom?

Caregiver or mom? The two are blended into one role when our children are small. As they grow, we let go of small bits of caregiving. They learn to drink from a cup, use a spoon, pull off their own shirt and shoes and brush their own teeth. They become potty trained. They go to school and learn to write their own name. They get their own snack and in time learn to feed themselves. Perhaps they cook dinner for the whole family once a week. If they have smart parents, they learn to wash their own clothes. Slowly our children grow and become independent and eventually are able to live on their own. They don’t need us to be a caregiver, but they will always need us to be a mom.

This is what I’ve seen happen in other families. It isn’t what I’ve experienced.

My daughter will be 23 tomorrow but has less skills than she did when she was 10. Rather than gaining independence, she has become more dependent. Her illness has slowly taken away her motor skills and her hearing and now her vision is declining. Her cognitive abilities are reduced and something as simple as choosing which shirt to wear becomes an enormous task. So I help. I help her dress. Help her brush her teeth. Help her eat and bathe and use the toilet. We seem to be living in reverse.

The tricky part is balancing her need for a caregiver with my need to be mom. Her need for constant support with her desire for independence. My need to keep her safe with my hunger for freedom. We’re both trying to figure this out. When am I the caregiver? When I am mom? When do I make decisions that support her life and when do I make decisions to support my own?

A caregiver can be more methodical; I set my heart aside and take care of her daily needs. It doesn’t matter how frightened I am or tired, it only matters that she get enough nutrition and stay hydrated. I can manage doctor appointments and therapies and other caregivers that come to relieve me. Caregivers don’t need much sleep. Moms do.

This mom is frightened and angry and sad. This mom is sick and tired of the call in the night from a daughter who can’t get out of bed for a drink of water anymore. But this mom is also grateful that the call in the night still happens. My daughter, my beautiful, funny, kind-hearted daughter is turning 23 tomorrow after every doctor said she’d never see 20. We’re planning a party and celebrating the wonder that is Rhia. I am in awe of this child… this young woman… who disrupted my own life with her needs and curiosity. I am honored that of all the potential moms in the world, this spark of wonder chose me.

We still haven’t figured out the balance, and maybe we can’t. Balancing the heart with the mind and independence with dependence might be impossible. Sometimes Rhia is as sick of me as I am of the constant caregiving. She’d love to walk out the front door and find her own life with her own friends in another state! I’d love to help her pack.

But here we are, our lives entangled by Mitochondrial Disease. I’ll keep trying to learn when to be mom and when to step back and be the caregiver. A caregivers primary role is to support independence. Maybe that’s a mom’s role too?

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.

[image error]

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!

 

Why I marched in Washington DC

One year ago today, I travelled across the country to Washington DC to join the Women’s March. There were marches all over the US, including several two hours from my home in Northern California. Why did I travel thousands of miles in the winter to the East Coast?

[image error]

“President Trump” horrified me. His obvious hatred of women should have barred him from winning the presidency, but instead it seemed to propel him to the highest office in my country. His racist and misogynist views should have ended his popularity; instead, his popularity grew. He won.

I looked at my 20 year old daughter and knew I had act.

Here is the link to my blog post describing the March on Washington

And here is my original post on why I marched

This year I am staying in my home town and bringing my daughter to our march downtown. There will be hundreds of us, not millions, but we’re a small town. I want to  support my own community and show my daughter what we’re marching for. She is developmentally delayed and doesn’t understand the larger issues of racism, misogyny, and classism. She doesn’t know who the president is (maybe she’s lucky in that!). But she understands kindness and respect. She knows how it feels to be teased and bullied. She values friendship and being polite. I want to show her that most people are kind. And I want to show her that she has a voice; she can say no. She can demand that the President and our Elected Officials are respectful of her and everyone else.

If you forget how to have fun, perform in drag.

I work. I take care of my daughter. I work. I clean the house. I get up in the middle of the night and take care of my daughter. I fill out forms and do paperwork and return phone calls to manage my daughter’s care. I work. I do laundry. I go to the grocery store and pay bills. I work. I take care of my daughter…

And in between all the demands of my life I try to write.

So when I went to the drag show at the Ukiah Brewing Company last October and Jef Valentine encouraged anyone who wanted to perform in the next show to contact her, I did.

Yes, I will dress up as a boy and lip-sync a song and try to be entertaining. I’ve forgotten how to have fun. I will dress up as a Drag King.

[image error]

photo by Rolina Fuentes

On Saturday, January 13th at the Ukiah Brewing Company, Edgar Ellen Hoe made his first public appearance to the song “Every Breath You Take” by The Police. Using a pair of black binoculars, I embraced the stalker in the song, eyeing women with pleading desperation and creepy longing. I think I succeeded; the entire crowd took a step back from the stage, and even though they laughed and cheered, no one really wanted to interact with me. Well done creepy Edgar!

[image error]

photo by Rolina Fuentes

I left the stage exhilarated, laughing at myself while also thinking of my mistakes. Next time I would focus on moving like a boy. Next time I would swing my hips less and keep my arms closer to my body. I’d practice walking like a boy; how do boys move anyway? And next time I’d do something reminiscent of Harry Potter, because everyone said I looked like an older Harry. That could be fun.

Next time?

Yes, I’ll do this again. Performing as a character completely different from myself forces me out of my comfort zone, out of my head, and into fun. I can’t think about my daughter’s illness or my relationship troubles or the bills that need to be paid or my job or that stupid pile of laundry that never disappears… Edgar Ellen Hoe doesn’t do laundry. Edgar Ellen Hoe doesn’t have a medically fragile kid. Edgar Ellen Hoe sleeps all night.

 

 

 

 

How deaf is she?

A friend sent me a link to a video called “Are You Deaf Enough, by Jessica Killgren-Fozard, which was posted by Ai-Media. Here is the link to the video:

https://www.facebook.com/aimediaAUS/videos/10155585533079220/

In the video, Ms. Kellgren-Fozard talks about how it feels when people ask her how deaf she is. How much can she hear? Why doesn’t she “sound deaf”? The questions and her response reminded me of how I feel when people ask about my daughter Rhia.

How much can she hear? What does she hear? Can she hear me at all? When did she lose her hearing? She looks like she hears me, are you sure she can’t hear my voice? Why doesn’t she wear hearing aids? Have you considered cochlear implants? 

The answers are: I don’t know. I don’t live in Rhia’s skin and I don’t have her ears. There is no way I can know what she does and doesn’t hear. All I can do is guess, just as the doctors and the audiologist have guessed. We think she hears sound, but it’s garbled, like trying to understand a foreign language under water. She doesn’t hear high pitched sounds. How do I know? Because when the smoke detectors go off she doesn’t even flinch. She looks like she hears you because she used to hear so understands that you are speaking to her and she is clever enough to make excellent guesses about what you are probably saying. But that too is my guess. Maybe she can hear you sometimes, but it fades in and out. She tried hearing aids but hated them. A cochlear requires major surgery and she hates that too, so she learned sign language. Any other questions?

The questions are all about what she can and can’t do. People listen to the answers, nod, attempt to communicate with her for about a minute, then move on. Once they have proven to themselves that Rhia can’t hear, they stop trying to talk to her.

Occasionally I am asked, “How should I talk to her?” What a wonderful question! Instead of wanting to know how Rhia adapts, a person will ask how they can adapt to her. I see people try to communicate with her and include her in an activity. It’s not easy and I don’t blame people when they eventually give up. But the ones who really try to connect with Rhia are rewarded with her bright smile. If they know even a little sign language, Rhia beams and says “They know my language!” All it takes is getting close, making sure she’s looking at you and then signing, “It’s good to see you.”

I know when people ask me about Rhia’s hearing they aren’t trying to be rude or cruel; they really want to understand and learn. And most of the time I don’t mind answering. But if you’re going to ask the hard questions, be sure to follow up with a question about communication. How does Rhia like to be included? What is her favorite thing to do? Can you help me sign a question? Does Rhia understand what is happening? How can I help her understand? Would Rhia like a cookie? How do I sign “cookie”?

The more you focus on who Rhia is and learn how to communicate with her, the more you will discover she is a vibrant, funny, kind hearted young woman who loves to sing and go for walks on sunny days. She’s also deaf.