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.

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. 

Untitled

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

Why do we ignore Veterans?

Today is Veteran’s Day in the United States, the one day of the year we honor those who served in the military. On the other days of the year, we forget them. We step over homeless vets as they sleep on the street. We complain about the budget deficit while our country fights a war in Afghanistan. We underfund the VA. We ignore the thousands of families living on military bases while their loved ones fight far away from home. We’re all patriotic when we see a young person in a military uniform but as soon as they’re out of sight we forget them.

Thank a Veteran for fighting for you. Thank a Veteran’s family for letting them go. Thank a Veteran for the years they dedicated and the hours they spent facing death. Do it today, but do it tomorrow, too. These men and women sacrificed for you and their beliefs. Sometimes they joined the military because they didn’t have any other choice; these are kids from rural areas with no money for college or a job waiting for them after high school. Some of them were drafted. Some fought because it was the right thing to do. Some fought even when they knew there was no good reason to.

They deserve our respect, not pity. They deserve to be remembered and honored every day, not just once a year with a flag wave. Thank a Veteran for their service, and then call your Congressperson and let them know you stand with Veterans. Demand fair treatment. That’s the best way we can say thank you.

Veterans-Day-2016

Image from Business Wire http://www.businesswire.com/news/home/20161110006634/en/Ryder-Marks-Veterans-Day-4500-Military-Veteran

Fire Storm

DL8mmL1UEAElIQp.jpg-large

(Image by Chris Pugh, Photographer. https://twitter.com/chrispugh)

October 12, 2017

It’s 2:00 PM and I’m sitting in a bar in Ukiah, California listening to the Fire Bombers roar overhead. Ten miles away, a fire burns out of control, destroying homes and families. Like so many in my neighborhood right now, I’m hiding in my local watering hole with a glass of wine in my hand watching the news on the TV’s. So far, none of the news reports mention Mendocino County. We are too far beyond the San Francisco Bay Area and we all feel forgotten.

South of us, in Sonoma County, fires rage as well. Northern Santa Rosa, a city of 170,000 people, has burned. Entire neighborhoods have been flattened and thousands of people evacuated. Devastation in the Wine Country, the news reporters say. It is frightening and sad and I am sick with fear for all those people. But I understand why my neighbors in this bar are tired of hearing all the news south of us.

Mendocino County is on fire too. Why hasn’t anyone mentioned that? 

On the other end of the bar, a man is slowly getting drunk while waiting to hear if his house burned down. A woman is collecting donations to feed horses evacuated to the fairgrounds. A teacher is crying because several of her students are now homeless. Everyone is hungry for information. Which roads are closed? Is Ukiah in danger? Has anyone heard from Andy? Or Lucinda. Is her family okay? A dog was found badly burned but alive; anyone looking for a black lab?

The bartender fills pint glasses and mixes drinks. She asks if I want another glass of wine. I shake my head. It’s time to go to the market and get supplies, just in case Hwy 101 closes and there are shortages. Everyone is surprised the power is still on. We all wonder for how much longer.

For now, Ukiah is safe. The town is filling with evacuees from Redwood Valley and Potter Valley. There are firetrucks and personnel everywhere and I know they will do whatever it takes to protect our vital airport. Ash falls and smoke burns our eyes, but the fires are burning away from us. We are safe. We are safe… I say this every night as I tuck my daughter into bed at night.

A hospital connoisseur.

My father needed a quadruple bypass this summer, so I flew to Oregon to be with him through the procedure and during his stay at the hospital. He was understandably terrified, and I admit so was I. But the procedure went well, his heart is strong, and he went home after only a few days in hospital. Now it will simply take time for his sternum and the incisions to heal. So far so good.

While I was with him at the Oregon Health and Sciences University Hospital (OHSU) I spent a lot of time exploring the sprawling campus. Seriously, that place is huge! And confusing. Floor 9 is the main floor while my father’s room was on floor 17 of an entirely different tower from the main hospital. It’s built on the side of a hill with incredible views of the city of Portland and the Willamette river. From my dad’s room we sat and watched the sunlight change the colors of snowy Mt. Hood. From a terrace below his room, I could see Mt. St. Helen.  I took a hanging trolly down to the water’s edge and then walked to the City center, about two miles. If you have to have major surgery, have it done at OHSU.

I’ve spent way too much time in hospitals in the last ten years, which makes me somewhat of a hospital connoisseur. My daughter has twice been a guest of Lucille Packard/Stanford Medical Hospital. My husband was hospitalized twice at University of California San Francisco (UCSF) for cancer treatment. And recently my daughter was a guest at our local, rural hospital due to pneumonia. I have tasted the food, walked the halls, interacted with staff and doctors, watched the nurses closely, taken in the views, strolled the neighborhood, and fought with insurance companies at some of the best hospitals on the West Coast. And OHSU is the absolute best.

It comes down to staff and communication. OHSU beats all the other hospitals we’ve dealt with in staffing levels and nursing care. Every single nurse was positive, helpful and considerate. Everyone worked hard to maintain a patient’s dignity and to communicate with them to alleviate fears. And if a nurse needed information from the doctor, she got it quickly. No paging the doctor for hours like at UCSF. Plus, the rooms were large and comfy, super clean, and had great views.

The downside to being a hospital connoisseur is the PTSD that hit me every few hours. While sitting beside my father I would suddenly feel the same panic I did when my daughter was hospitalized for metabolic failure. The past and the present would blur until my body didn’t know the difference. My father was resting comfortably, but my heart would pound the same way it had when my husband was groaning in agony. The only cure was walking. I’d pace up and down the halls, outside on the terraces, up and down stairs, walking to town and back… just walking until the panic would subside I could feel the present pushing away the past.

This is old fear. Don’t let it blend in with the new fear. Will my father survive his surgery? Will he heal? Will my husband’s cancer come back? Will my daughter crash again? 

shhhhhh… let it go. Keep walking. Keep breathing.

Now that my father’s surgery is over and he is well, I have one more request from the universe: no more trips to the hospital this year!  I don’t need to explore new hospitals, or even old ones for that matter. Please keep my loved ones healthy and safe. Keep me healthy and safe. I may be a hospital “pro” now, but it doesn’t mean I want this to become a habit.

Lobbying for Healthcare in a bizarre world called Congress.

My plane landed in Washington DC at 5:30 AM. I’d never taken a “red eye” before and I was surprised I’d managed to get a little sleep on the flight from San Francisco. Grabbing my suitcase I found my shuttle and rode the 20 minutes to my hotel. In the lobby, the clerk said cheerfully, “Good morning. Checking in?”

I held up a finger. “Just a minute. Where’s the bathroom?” She pointed down the hall to my left.

Quickly I changed out of my yoga pants and tshirt and put on my professional looking dress, one I had chosen because it didn’t wrinkle. I brushed my teeth, put on earrings, slippped into heels, and added lipstick. After leaving my overstuffed suitcase with the front desk I joined the group of people heading to Congress to fight for health care for people with Mitochondrial Disease. It was 7 AM and I needed coffee bad. But I was ready.

19702009_10155567028774515_4647985694440954007_n

This was day one of the UMDF conference. I joined my assigned group, a doctor and a mom from California and a man who had LHON. We were to meet with 5 of our political representatives or their staff,  in the Senate and the House. At first we weren’t sure what to do, but once we got to Senator Feinstein’s office our group found its voice. The doctor in our group explained about Mitochondrial disease and the research efforts of the National Institute of Health. The mom talked about supplements and the need for insurance companies to provide them. The man with LHON talked about being affected with a disease. And I talked about the day-to-day-caring for my child and how important MediCare was for her life. The staffer took notes and asked numerous questions. We four felt like we’d made an impact.

The next staffer was either new or simply overwhelmed. He took a few notes, but mostly looked like he had no idea what was happening. We were all crammed into the reception room of Kamala Harris’s offices and people came and went and chatted over our heads as we tried to give our presentation. I couldn’t blame the poor guy; it was Thursday and all week people had been yelling about the GOP Healthcare Bill. Everyone was desperate to go home for the 4th of July break and I suspect at 10 am he’d already worked 5 hours.

From the Senate building we walked across the Capital grounds toward The House of Representatives Building We had to take the long way because the Capital building was blocked off by armed military police. Our local escort shrugged it off;  road closures and the military on alert was just an ordinary day in Washington DC.

At the Offices of the House of Representatives we gave the same presentation, this time directly to Judy Chu. She was extremely kind and appeared interested in what we had to say. Here was a real pro, someone who could listen to people talking health care during a week the words “health care” made people scream. At the end of our meeting, I thanked her.

“I really appreciate how hard you and other Democrats are fighting for people with disabilities like my daughter.”

She shook my hand and smiled. I wonder if politicians get many thank you’s?

19665197_10155567022479515_8029605538222205210_n

Then we met with a Republican staffer from New York who was obviously fed up with the words “health care” and gave us 4 minutes of his time. By then our group had split up. I met my Representative, Jared Huffman, on my own. Our meeting time had been changed but I didn’t know, so I sat with a staffer and talked about my daughter. By then it was 3:00 and my brain was so fried I couldn’t remember my part of the presentation, let alone how to explain Mitochondrial disease and the National Institute of Health. I’d walked up and down and around the halls so many times I lost track of which building I was in. But this staffer sat at the table with me, smiled warmly and asked questions. And then Jared Huffman himself stepped out of a meeting for 2 minutes to shake my hand. I wanted to hug him, but instead, I thanked him.

Walking around those buildings, I passed office after office of congresspeople from every state. Climbing the stairs, I detected that the marble steps closest to the hand rail were slightly grooved; thousands of footsteps over hundreds of years had slowly worn down the lip of each step. Every conversation crashed into the next, echoing down the stone halls. There wasn’t a moment of quiet, not even inside the offices where we met people who at least appeared to want to help. Once, I used the wrong elevator, accidentally hopping on the one reserved for elected officials. An older gentlemen in a nice suit smiled but didn’t reprimand me. I wonder which state he represents?

By the end of the day, I was worn out, confused, and ready to finally check into my hotel room for a shower. But I was also exhilarated. Here I was, actually talking to people in Congress about healthcare the same week Congress was debating healthcare. I shook the hands of people fighting for my daughter. I don’t know how they do it, day in and day out.

And I have a better understanding of our democracy, at least the ideal of democracy. A thriving democracy is more than just voting every few years; it requires participation. It needs us to talk and listen and debate and argue. We need to interact with our Senators and Representatives and make sure they hear us. Otherwise the only people they’ll hear are the people with the checkbook.

I love Washington DC. This makes the second time I’ve been there since January and I have a feeling I’ll be back.