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.

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.

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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!

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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.

 

 

 

 

New Year, new permission to be creative

Well this is embarrassing; I haven’t written anything since November. Since that was the start of the holiday season it’s not too surprising, but it is a sign that when life gets hectic, writing stops. Does it stop for you as well? How do you keep the words flowing when you’re swamped by family and work and friends and activities that all seem so damn important.

Friends and family are important! But so is writing. Writing keeps me focused and centered, which makes me much easier to deal with. You’d think my loved ones would insist I write every day. “Here Terena, take this mocha and go to your room for an hour and write. You’re getting bitchy.”

I do it to myself; writing brings me happiness, but doesn’t benefit anyone else. I feel selfish when I take the time to create and rest. Most of the women I know feel the exact same way; our creativity doesn’t matter unless someone gives us permission to use it.

Bullshit! That’s my new mantra for the New Year: Bullshit!

Starting right now, I give myself permission to write. Permission to speak. Permission to have fun. Permission to take care of myself. Will you give yourself permission to be your most creative self?

Permission is just the start; you have to also follow through and do it. But if we wrap our brain around the idea that what we love to do is important, then we’ll take the time to do it. As long as we don’t think it matters, we’ll put everything and everyone above what we really want to do. I want… no, I need… to write. I can’t explain why and it doesn’t matter. I don’t need to justify my need. Justification ties in to permission. I don’t need to justify why and I don’t need anyone’s permission other my own.

No matter what you love to do, give yourself the time and energy to do it. Whether you love to garden, paint, sew, cook, sing, dance, take pictures, or knit baby booties, do it! Do it with all your heart. Even 30 minutes doing what you love will feed your creative soul.

But no guilt. Guilt kills creativity and happiness. If all you have is 15 minutes while hiding in the laundry room because your kids won’t stop bugging you, do it then. Don’t beat yourself up because you only had 15 minutes! Praise yourself for carving out a few minutes to be creative. No excuses and no guilt. We can do it!

Of course I have to follow my own advice. Who’s gonna help me?

 

 

How To Work Self-Care Into Your Family Caregiving Plan – Guest post by author June Duncan

The following is written by June Duncan, author of The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers, coming in Winter 2018. Click the link for more information. 

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How to Work Self-Care Into Your Family Caregiving Plan

When your life revolves around caring for another person, it’s hard to make time for yourself. But if you don’t, you could end up burning out, leaving you unable to continue caring for your loved one.

Caregiver burnout is a serious problem for people caring for elderly family members. It’s known to contribute to depression, concentration problems, and substance abuse, and even leads some caregivers to mistreat or neglect their family member in need. The cause? Chronic stress from neglecting your own needs as you care for another’s. For that reason and more, it’s important that family caregivers find ways to fit self-care into their schedule.

First, healthy meals should be part of any caregiver’s day. Preparing nutrient-dense meals is not only good for the senior in your care, it also ensures you get the nutrition you need to keep illness at bay. Develop a list of healthy meals you can prepare in 30 minutes or less to take the guesswork out of mealtime. When finding time to grocery shop for ingredients is a challenge, grocery delivery services or food subscription boxes can simplify the process.

Likewise, committing at least 30 minutes per day to moderate exercise like walking or gardening helps caregivers meet the activity levels recommended for physical health. If you exercise alongside your family member, it helps their health as well and provides an opportunity to bond — plus, finding time to exercise is easier when you can bring your charge along. For more vigorous exercise, consider signing up for a fitness class at a center that also offers classes for seniors so you both can benefit.

To round out the physical health side of things, ensure you get plenty of sleep each night. Not only does poor or insufficient sleep limit your ability to cope with stress and control your emotions, according to the National Heart, Lung, and Blood Institute it could also contribute to depression, increase the risk of chronic health problems, and lead to dangerous mistakes like giving the wrong dose of a medication.

Of course, your needs go beyond the physical. It’s also important to take care of your mental health so you have the capacity to treat your family member with patience and kindness rather than reaching for alcohol or drugs to alleviate stressors. This may seem simple enough at the beginning, but stay true to yourself even when things get really tough.

Chronic stress, like the tension many family caregivers experience, can lead to serious mental health problems that include depression, anxiety, addiction, and even cognitive impairment later in life. And although many people don’t realize it, stress is also intimately connected to physical health: According to the American Psychological Association, chronic stress can cause muscle pain and digestive problems, suppress the immune system, raise blood pressure, and contribute to serious illnesses like heart disease and obesity. Since stress can affect every aspect of your health, it’s clear that keeping it under control needs to be a priority.

To manage stress while providing caregiving, identify stress relief techniques you can apply throughout the day, like flowing through a meditative yoga sequence, practicing 4-7-8 breathing, calling a supportive friend, taking a power nap, or visualizing a relaxing scene. Each of these stress-reduction strategies can be done in 10 minutes or less and requires nothing more than a quiet space, so you can employ them at a moment’s notice when you need relief.

It’s not unusual for family caregivers to feel guilty about taking time away from their charge, but self-care is an essential component of a sustainable caregiving plan. When you take care of your own physical and mental health first, you’re better equipped to handle the challenges of caregiving with dedication and grace.

Image via Unsplash

All grown up

The day I feared and hoped for came: Rhia graduated from school. When she turned 22 in May, she officially “aged-out” of her school based programs. She is now an adult.

Her school had a small ceremony for the three students who were also moving on to adult based services. But first, every student in the program got an award. One was for “Best Dancer.” Another was “Kindest.” A tall, shy boy was given an award for being the “Most Helpful.” And then it was Rhia’s turn. She stood up on her wobbly, colt legs and walked to the front of the room where she was given her Graduation Certificate and her award. Her’s said, “Most Likely to Speak Her Mind.” Everyone cheered.

They know my daughter well.

When Rhia was 5, she got in trouble for something (I don’t remember why). Instead of backing down, my tiny, elfin child put her hands on her hips and glared up at me with fierce eyes. “You can’t talk to me like that!” she declared. Fighting laughter, I sent her to her room. I was so proud of her and prayed that nothing would break that powerful spirit.

17 years later, nothing has… not multiple doctor’s appointments, losing her hearing, worsening eyesight, three hospital stays, deteriorating strength, ataxia, and anxiety. She will tell you exactly what she thinks and will fight hard if she thinks you’re wrong. Brutally honest, she is also extremely kind. She’ll tell you the truth, but be the first with a hug if she realizes she’s hurt you. She’s never intentionally cruel and fights for others as hard as she fights for herself. I wish I had been that strong when I was her age; instead I allowed others to walk all over me. I didn’t believe I mattered, but Rhia knows that she does.

I’m afraid. She’s not. But she doesn’t understand how complicated services for adults with disabilities can be. I see road blocks, paperwork, questions, and meetings. I’m afraid her world will get smaller now that she doesn’t have an ASL interpreter. Will we find one? Can anyone or anything replace the incredible support she’s gotten in school? How will I manage to piece together anything close to that?

Rhia is happy. Her greatest joy is she can now wear all the Disney t-shirts she wasn’t allowed to wear in school.

“I can wear anything I want!” she said, tossing school shirts on the floor. “I’m all grown up!”

“Yep,” I said, “You can wear Disney everyday.”

“Hooray!” More shirts flew into the air. I quietly scooped up the best ones to keep for the times she needs to wear something nicer than a Princess t-shirt. That will be another battle on a different day.

I need to have faith in my daughter. A deaf-blind young woman who wins an award because she always speaks her mind is no one to underestimate. And I’ve always got her back. We’ll find a way.

 

 

 

 

 

100 days of kindness

The first 100 days of a presidency are meaningful. The president elect announces, “In my first 100 days…” and everyone watches to see if he follows through. The first 100 days can set the tone for the rest of his term. That’s why I want to challenge everyone to 100 days of kindness.

President-elect Trump has spoken proudly about his dislike of foreigners and Muslims. He has denigrated women and mocked people with disabilities. His tone has made it okay for white supremacists and misogynists to harass people of color and women. Even people who don’t think of themselves as racist now believe it’s fine to tell racists jokes in public. Lashing out at your neighbor is allowed.

But I believe we can set a new tone simply by being as vocal about kindness as Trump is about hate. Trump has embraced social media as his platform of intolerance. We need to take it away and turn it into a platform of kindness.All you have to do is report kindness on social media with the hash tag #100daysofkindness. Share a kind word with the world. Take a picture of an act of kindness and post it. Not to show off how “good” you are, but to drown out some of the hate speech filling the internet. This isn’t about making you look better to your friends, it’s about spreading generosity and compassion.

You don’t have to share anything on social media, though. Just commit to being especially kind to others for the first 100 days of the Trump presidency. If thousands of people did that, imagine what could be achieved. While Trump continues to insult and denigrate, we could completely ignore him simply by being kind to a stranger. Go ahead and bellow, Mr. Trump. No one is listening.

#100daysofkindness. Imagine the possibilities

Bias at the Country Club

Recently I attended a beautiful wedding at the Silverado Country Club in the Napa Valley. The ceremony was held under the Oak trees near the golf course and the bride was gorgeous. Everyone was beautiful and happy and wearing their best. In my hand-me-down designer dress and borrowed designer shoes I looked like just another well heeled member of the club. No one could tell the only thing new was my undies, right?

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When I first arrived at the country club, I parked my old Honda next to BMW’s and Mercedes Benz and walked to the front door of the mansion/club house. Walking across the green lawn toward the tall front doors I felt several people staring at me. What, haven’t you ever seen a woman in flip flops and a “Drama Queen” apron? The staff directed me to the suit where the bride and her entourage were getting ready. As mom’s best friend, my job was to keep mom calm and hand her tissues as needed. I watched the bride and her bridesmaids be transformed by an army of professional stylists. Amidst the chaos, the bride sat happy and serene, completely in control of everything. Amazing this was the same girl I met when she was 13 and surly.

Sipping expensive champagne, I kept my apron on so I wouldn’t spill anything on my hand-me-down dress and felt utterly out of my element. What the hell was I doing there surrounded by such wealth? Their jewelry was real and their shoes cost more than my monthly grocery budget. Everyone was staring at me, looking down their noses, aware my necklace was from Cost-Plus.

Or were they?

Were these smiling women really treating me like “the help”? Or was I so insecure being in a world I couldn’t dream of affording I assumed they disliked me? Did I dislike them?

Actually, every single person there was kind and considerate. When I ran out of champagne three bridesmaids asked if I needed more. The bride and her new husband were happy to see me. Everyone from the staff to the wealthiest guest was genuinely thoughtful and interesting. Not a single person treated me with contempt. And I liked everyone I met.

I walked in to the Silverado Country club assuming I didn’t fit in and would be ignored. I decided before I arrived that the people would be rude and I’d have nothing in common. Instead I met interesting people who were there because they loved the bride and groom. Just like me. We cheered and toasted and laughed and told stories together. The only one who thought I wasn’t good enough to be there was me.

 

100 Happy Days 1: A room full of estrogen

shoes from Polyvore http://www.polyvore.com/harper_red_bow_high_heels/thing?id=53609723

Feeling run down? Hassled? Angry every time the laundry hamper fills? Then you need to pack up some clothes you no longer wear and go to a Swap-O-Rama party. The more laughing women the better. Unless you’re a man, then all that estrogen might be scary. Because my daughter is medically fragile, we tend to live a very different life than other people. I feel like I live on a different planet most of the time. But I forced myself to go to my friend’s clothing swap party. The house was packed with women I barely knew digging through racks and racks of clothes other people had brought. I hung up the items I’d brought, grabbed a glass of wine and started “shopping.” Within 30 minutes I felt comfortable with all those strangers and had a fantastic time. We laughed, tried on clothes, joked and teased each other, talked about our kids, our partners and our pets, and had far more fun than I thought a group of women could have. Mostly, I realized I’m not so different from other women. My child is different, but we all share the same hopes and dreams for the people we love. We all fight for our children. We all need to laugh. And we all desire a pair of red heels.