Traveling Outside My Comfort Zone

photo of a large steel sculpture of a fish with a red heart near its tail. white snow is on the ground and there is more light snow falling.

I’ve recently returned from the first vacation I’ve had in four years. And it wasn’t just any vacation… it was a bucket list vacation. I traveled to Chena Hot Springs outside Fairbanks, Alaska with one of my closest friends to see the Northern Lights.

The first time I went to Alaska was in the summer of 1988. My boyfriend and I drove the “AlCan” from Santa Rosa California to Fairbanks Alaska in a dark brown Econoline van. There was a bed in the back and bug netting on the windows to keep from getting eaten alive by Alaska’s famous mosquitos. It was an exhausting, beautiful adventure I will never forgot, even though my boyfriend and I split up the following year. I swore I’d go back to Alaska one day and finally I did, this time in the Fall.

Fall in the Alaskan interior is icy but not yet frigid. The snow is new and it sparkles like it is covered in silver glitter. The sky looks dark blue against all that crisp white. I had no idea how much I would love the sound of snow under my feet; it really does crunch! I’m a California girl who doesn’t ski so couldn’t imagine how cold 12 degrees really is. But once I figured out how to wrap a scarf properly to keep the cold off the back of my neck, I fell in love with the touch and scent of that shivering, dry air.

And we saw the Northern Lights! It was a cloudy night so we assumed we’d miss them, but at 1:30 in the morning, the clouds thinned and a section of the Western sky opened. There was a bright white glow, tinted yellow, with absinth green streaks radiating from the top and spreading across the sky over our head, softly visible through the thicker clouds. It was quiet and still in the night and the cold pressed against my snow boots and two pairs of socks but I was transfixed. I didn’t care that we only saw one tiny piece of the Aurora Borealis; I saw the Aurora! A child hood dream at the top of my bucket list had come true.

photo of a woman in a red coat leaning against a large steel sculpture of a dragon. There is snow on the ground and on the sculpture.

This trip was more than a bucket list adventure, it was also to test my ability to let go of control and leave Rhia at home for several days. I have left her with one of her dads for weekend now and then, but this trip was different. Rhia’s needs are more complex and her health more tenuous. I flew a thousand miles away to the wilderness with limited cell service, trusting that my father, her dad and both of her caregivers could take proper care of her and handle any emergencies that might happen. I was nervous and felt guilty, but I went.

And Rhia was fine. She missed me, but instead of punishing me with angry outbursts and demands as usual, she asked, “Did you have fun with your friend?” My dad said she only yelled at him twice when he forgot to do something. Nothing bad happened when I left. She didn’t fall or get sick or stop breathing or any of the hundreds of terrors I imagined before I forced myself to pick up my suitcase and go to the airport.

Rhia has matured and I’m learning to let go of being in control of her well being. Perhaps I can go on another trip next year, maybe a longer trip, even farther away.

Where in the world should I go?

photo of four yellow sunflowers encased in a rectangular block of ice.

An Open Letter to my Stalker

Congratulations. You win. I’m scared. You swear that’s not what you want but after I’ve repeatedly asked you to leave me alone, what else can I believe from your actions? I think you enjoy messing with my head. And because of you, I almost stopped writing. I almost deleted my blog and considered changing my name when my book is published. But even though I know you read every word, which makes me cringe, I won’t be silent. Not ever again.

I tried responding to your messages on Facebook, but for some weird reason I couldn’t write back to you. I could only read the messages you sent. It looks like when I blocked you, Facebook decided that meant you could keep writing me but I couldn’t write back. Perhaps that’s for the best; there are thousands of people experiencing this same situation, both as the person being stalked and as the person who is obsessed. Maybe this letter will help others, too.

I was sorry to read that you are in so much pain and I truly hope in time you find some peace. However, you are writing to me as if I’m still that scared 19 year old girl you locked in the bathroom and threatened to kill. I assure you, I am not. That was 35 years ago. The little girl is gone and in her place is a 55 year old woman with gray hair who is fully capable of taking care of herself. The only person still in that bathroom or experiencing the harm you caused is you.

You keep asking for my forgiveness. I can forgive you as a human being because I know you were struggling with substance abuse, but I cannot forgive your actions. The only person who can forgive you is you. You also say you are in a program and want to make amends to me. You’ve done that, several times. Stop trying to make amends. They are causing pain. Go back to a meeting and focus on Step 9:

Made direct Amends to such people wherever possible, except when to do so would harm them or others.

The best way you can make amends to me is to stop trying.

You’ve mentioned my daughter recently, writing how beautiful she is and how much she reminds you of me. I need you to take a moment and think about what you are doing. Now, imagine you are in a forest and you see an adorable bear cub. You don’t mean any harm, you’re just looking. Suddenly, Mama Bear appears from nowhere to defend her cub. You have zero intention of harming the cub but Mama Bear doesn’t know that. What is the most dangerous creature in the world? A mother defending her offspring.

I am that Mama Bear. Let that image replace the image you hold so tightly of me at age 19. I am not writing this to embarrass or threaten you, I am simply telling you or the fiftieth time in 20 years, in this open letter that I know you are reading right now, to stop contacting me.

Forgive yourself. Move on with your life.

I have.

Guest Post by Sharon Wagner of Senior Friendly

Image: a young woman who appears to be a little person sits on a bed and types on a laptop

Image via Pexels

How to Build a Business Career When you Manage a Disability

The Americans with Disabilities Act makes it illegal for any employer to discriminate against someone on the basis of a disability. As a result, your disability doesn’t stand in the way of your ability to get a good-paying job in business. Terena Scott shares the following steps that can help you get your career off the ground.

Start with Education

The U.S. Bureau of Labor Statistics advises that a bachelor’s degree in business is required for most business jobs, and a master of business administration (MBA) degree can increase your chances of securing an entry-level position with a high rate of pay. Online MBA programs provide flexible scheduling and pacing that benefit individuals with disabilities who may require adaptations such as more time to complete assignments. Plus, online programs allow you to continue to work and care for your family while earning your degree. You can choose to pursue one of many specializations, including:

  • Accounting
  • Corporate finance
  • Marketing
  • Strategic planning

Recipients of MBA degrees can seek employment for jobs with numerous titles, including general manager, business administration director, and operations director.

Land an Internship

You’ll face a lot of competition for top jobs in business. Having internship experience on your resume can set you apart from other applicants, and you may even find opportunities for future employment at the sponsoring organization. The American Association of People with Disabilities (AADP) offers a summer internship program for disabled high school graduates, undergraduates, and graduate students. Through the program, you can land an impressive internship with a congressional office, federal agency, nonprofit organization, or for-profit company.

Network while on Campus

Networking isn’t just important once you enter the business world. Building relationships with faculty and fellow students while on campus gives you connections that can lead to work opportunities in the future. Some colleges and universities are home to chapters of nationwide mentoring and networking organizations for people with disabilities.

Help Your Resume Stand Out

Your cover letter and your resume are the first impression you give to a hiring manager. If either looks haphazardly put together, the likelihood of you hearing back is small. While you may not have a lot of experience, put your best foot forward through a well-prepared cover letter and a succinct resume describing any experience or skills. Also, set up a LinkedIn page, and upload your resume and a photo. Avoid mistakes like using an old photo, lying about your experience, leaving your profile incomplete or being inactive. Employers pick up on this, and it can hurt your chances of landing a job.  

Know Your Rights in an Interview

Employers aren’t permitted to ask if you’re disabled or inquire about the severity or nature of your disability. Even if your disability is obvious, you don’t have to discuss it; however, you may choose to. The Job Accommodation Networkrecommends bringing any assistive technology you rely on to the interview.

Use Disability Resources to Your Advantage

In addition to researching and applying for positions on your own, you can take advantage of disability employment resources during your job search. Your state’s Vocational Rehabilitation agency and your closest American Job Center office may be able to assist you with job placement or provide you with a list of openings at companies that are striving to increase diversity and eager to hire individuals with disabilities.

Get on the Path to a Career in Business Today

Now that you know the six steps for launching your career in business, you’re ready to take action. Start by researching online degree programs and completing applications as you continue your journey toward the career of your dreams.

Sharon Wagner uses her site Senior Friendly to offer advice geared specifically toward seniors to help them make healthier choices and enjoy their golden years

Mourning more than Ruth Bader Ginsburg

I am at a candlelight vigil for Ruth Bader Ginsburg. Holding my battery operated rainbow tea light in the palm of my hand, I think about RBG and how hard she fought against time and cancer. She was a small, elderly woman with the weight of democracy on her shoulders who kept fighting for us until her tiny body couldn’t support the burden one more day. She is gone and I am now very afraid for the future of many of the people I love.

More people are coming, which is both good and bad. I haven’t been in a crowd in over six months and even though we’re all outside and everyone is wearing a mask, I’m nervous. Perhaps I shouldn’t have come. I didn’t go to the Black Lives Matter marches for fear of exposing myself to COVID and then taking it home to my daughter. Across the street, two police cars are parked and the officers inside are staring at us. I look at the people around me and wonder what makes the police so watchful. This crowd is mostly white, middle aged, upper middle class women like me. The most radical thing here are the four women wearing pink pussy hats. Looking back at the police I feel sadder.

I came tonight because I need to take a moment from my fearful, pandemic driven life and grieve. I mourn the 200,000 Americans and the millions killed around the world by COVID. I mourn lost Black lives. I mourn the thousands who lost their homes to wildfire and those who died when they couldn’t escape. I mourn for the elderly trapped in nursing homes and the children kept away from their friends. I mourn for everyone who is terrified and lonely and has no idea how they’ll survive another day.

I wonder if Ruth felt that way? For all her notoriety, she was still a human being fighting cancer during a pandemic and trying to keep her job. Did she have doubts? Was she lonely? Did she cry when she listened to the news too?

Three young men approach me and one asks, “What’s going on? Why are all these people here?”

“This is a candlelight vigil for Ruth Bader Ginsburg,” I say. “She died yesterday. “

“Who’s that?” he says. The other two shrug. So I tell them about RGB and why everyone is so upset and what’s at stake with the Supreme Court. I explain what she fought for and how she protected Civil Rights. They’re impressed.

“Did she believe in Black Lives Matter?” another young man asks.

“Absolutely!”

One of them will turn 18 in two months, too late to vote in this election, which makes him mad. We talk more about voting and why it matters and then they wander away but stay close to the perimeter, talking and watching the vigil. RBG would be pleased.

More people are coming and it’s getting harder to keep my distance; time to leave. I look at my rainbow tea light change from red to purple and smile. A rainbow candle for RGB. I wish it was safe to stay and share the grief and fear with other people and I realize how much I miss this. I have been grieving all alone for too long, just like everyone at this vigil I suspect. I walk away from the crowd, get in my car, and drive back to isolation.

The Sickness

Rhia is slowly understanding that something very strange is happening in the world right now. She calls it “The Sickness.”

“The library is still closed? It’s been closed for weeks!” she says, putting her library books back on the shelf where she keeps them separate from her own books.

“I know, but there are a lot of people sick right now, so the library needs to stay closed,” I say.

“First everybody is sick at your work, and now there is a sickness at the library… That’s silly!”

“You’re right. It is.”

“Why is everybody so sick?”

“There’s a bad germ that can make people sick. That’s why we’re staying home so we don’t get sick too. And if we stay home it helps other people not get sick.”

Rhia is quite for a moment, then she says, “I remember when I was little there was a sickness at my school and we all had to get a shot. I didn’t like that.”

Many years ago there was a meningitis outbreak at Rhia’s Elementary school. “I remember, too.”

“I didn’t like getting a shot. Do they have a shot for the sickness now?”

“No. That’s part of the problem. If there was a shot, then people wouldn’t get so sick.”

“Hmmm…” Then she asks, sounding worried, “Do people always get sick in San Francisco?”

“No. This is just a weird sickness happening now, but not always.”

“When will people stop getting sick?”

“I don’t know. Maybe in the summer.”

“It doesn’t make any sense! Why is the sickness now?”

“No one knows, Sweetie. We just have to wait until it ends.”

“I think that’s just silly!”

“I agree.”

She thinks again, then says, “Can we go to the library next week?”

I don’t know how to tell her Disneyland is closed too.

Survival Skills from Rhia

Rhia and I are sitting together watching Frozen in the middle of a rainy Sunday afternoon. We’re safe and healthy, blessed with a warm house to shelter in and plenty of food. During this time of so much sickness, what more do we really need? The interesting thing is that not much has changed in our daily lives. Before Covid19, Rhia and I lived a quiet life. We rarely went out to eat or visit friends. Our life pretty much revolved around trips to the library and to Starbucks for a hot chocolate. Occasionally people came over, but that too was rare. About once a month I had caregiving coverage so I could go out with friends. So our ordinary life is about the same, except for the library being closed.

Isolation is nothing new to us. Neither is fear. Rhia and I have lived with the uncertainty of an undiagnosed disease since she was born. Every time Rhia gets a cold or a high fever I wonder if this will be the one that puts her back in the hospital. She almost died once after a flu and then a few years later she was hospitalized with pneumonia. The slow decline of her physical health coupled with the lack of a diagnosis means we have no idea how long she will live. One more year? 5? 10? Her doctor’s thought she’d never reach age 20 but she’s almost 25. Every prediction has been wrong. Living with a see-saw of hope and fear makes us prepared for the uncertainty of this pandemic.

This isn’t some kind of “welcome to my world” post. Not at all! I am heartbroken that millions of people in the world are facing illness and death and the constant uncertainty about tomorrow. I know what it’s like to be broke and unable to work because you have to care for loved ones, and I wish no one had to deal with that. I am grieving for everyone and praying for a miracle, just like everyone else.

But what I’ve realized during this Shelter In Place is that Rhia has taught me incredible skills about survival. She has taught me how to live right now, enjoy all of the small moments of life, and feel gratitude. She has taught me it is okay to feel afraid, sad, or angry, and that you should give yourself time to grieve when you need to. She’s taught me how to get up in the morning when I really didn’t want to. She taught me how to walk with fear and not let it overpower me.

I’ve also learned very practical skills, like stock up on essentials before you need them. I never knew when Rhia might get sick or just too tired to go to the store, so I always have supplies (including TP) to get us through a couple of weeks. A few times I’ve needed something urgently so I called a friend or Instacart. When we first moved here I set up our Earthquake kit, which means I already have plenty of water and batteries. I always fill up the gas at a half tank and carry tools to repair her wheelchair everywhere we go. I also have managed to scrimp and save a couple of months of survival money. When you live with constant uncertainty you learn to be ready.

There have been times when I’ve resented Rhia’s disability, especially lately. I long for my own life, one that doesn’t include constant interruptions of sleep. I want to travel, but who will care for Rhia? I resent her dads who get to live their own lives and friends who go to all those places I long to see. But right now, I feel blessed. I am scared and tired and stressed out, but blessed. Rhia and I are safe and we have everything we need to get through the pandemic. We are both healthy and I pray we stay that way. Travel and going out aren’t important. What matters is love and caring for each other. I will care for Rhia for as long as she needs me, and she cares for me in a thousand ways that it took a pandemic for me to see.

When the pandemic ends, and it will, I won’t forget what I have learned. I pray none of us do.

Creating a Day Program From Scratch

It has been 6 months since I last wrote in this blog. During that time I’ve worked hard hunting for a program that fits Rhia’s needs. A program that includes activities, friends, art, excursions into the community and people who speak American Sign Language. She was placed on the waiting lists of two different programs that had everything except ASL and she tried out one, but it was a disaster. Then we found an incredible program in San Francisco for people who are Deaf and Developmentally Delayed. However, there was no transportation to get her there. We fought hard and finally the Regional Center agreed to provide it.

At last, she could go to ToolWorks!

Not so fast… Just like every program in California, ToolWorks is short staffed and struggling to meet the needs of the people already in their program. As soon as they had staff, Rhia could go!

We waited four months.

Finally, I’d had enough; we decided to hire people and create our own program. I put out an add for caregivers and quickly heard back from several interested people. Out of 10 applicants I interviewed 4. Actually I interviewed 2 because one no-showed and another cancelled. I hired one brilliant woman who met all the qualifications, including basic Sign Language, but she texted me an hour before her shift started, saying she wasn’t coming. After a good cry I ran the add again and thankfully hired a dependable, kind woman who actually shows up and takes great care of Rhia. Unfortunately she doesn’t know sign language.

Fine. We can work with this. With dependable staff Rhia can start finding things to do in the community. She loves the library, so they can go there. She also loves coming to my work, so I pay her to clean toys on Friday afternoons. She also likes being helpful, so she and her caregiver do the grocery shopping on Mondays. They also clean the kitchen every day. It’s a start, but far from what I dreamed for her, and I suspect far from all she’d like to do.

Rhia wants to be a teacher and work with young children. She loves creativity and making art. She enjoys going out to lunch and window shopping with friends. And she loves talking to people. Unfortunately, no one can really have a good chat with her except me.

Rhia doesn’t have close friends; she has caregivers.

She isn’t alone; so many disabled young adults are isolated from their peers, which is why a staffed Day Program can be great. How wonderful to spend the day with other people just like you, young adults who need help in the bathroom and use a wheelchair, have trouble communicating and can’t even feed themselves without help. Outside of a staffed program it’s just you and your caregiver.

The caregiver has worked a month, so they are still getting to know each other. They go on short outings and run errands for Mom. Rhia is slowly warming up to the caregiver as the caregiver learns to communicate with her. This gives me hope that in time they’ll be able to do more together and Rhia will make connections with others in her community. We’ll all figure out what activities are available and what she will enjoy. It just takes time.

Time… It’s been over a year and Rhia and I are still trying to find a way for her to have a life filled with fun and friends.

I’m so sorry, Rhia. I thought moving to San Mateo would make life easier for you.

Where have all the Day Programs in California gone?

Once upon a time there were wonderful places called Day Programs in California. These programs provided social opportunities, vocational training, emotional support and entertainment for thousands of Californians with disabilities. Everyone found a place to belong, no matter the disability or impairment.

Those days are long gone… or maybe they never existed. Maybe great day programs have always been mythical, like unicorns and Starbucks drinks that won’t make you fat. But what I’ve heard from people who work in programs and the State agencies that support them is that there once were a lot of really good opportunities for people with disabilities in California.

Used to be… that’s the key phrase. Thanks to budget cuts and astronomical rents, day programs have had to shut-down. One after another has collapsed under the growing cost of rent, the need to pay a living wage and the yearly decrease of funding from the State. Most programs are supported by the Regional Center, a State agency that vendors with local people to provide programs and activities. The Regional Center can only pay what the State allows, but the State doesn’t provide much more than minimum wage, a rate that is impossible to live on. Programs rely on grants and other private supports to get by. Those funding streams have also disappeared, which is weird because it’s not like there isn’t a ton of money in California. Programs also need a space to provide the services, but rents have pushed “site based programs” into “community based programs”, which are not always the best option for people with disabilities. Even the community based programs are financially challenged because they then have to provide transportation and staff to support their clients. They can only pay a little more than minimum wage, which no one can live on, so staff turnover is high. Eventually those community based programs are forced to shut down, too.

Every year the State budget cuts program funding for people with disabilities and more people are forced to stay home, which strains the families who care for them. How are they supposed to pay their own rent when they miss work providing care to a loved one with a disability?

There once was a State Hospital Program which cared for thousands of people with Developmental Disabilities. And yes, I know the Hospital system was awful and people were mistreated and hidden away from the larger society. Happily, most of those State Hospitals have shut down and people with disabilities returned to their families or placed into smaller group homes. But here’s my question: where did all that money go when the State shut down the State Hospital System? And if day programs and care homes are being forced to close, where exactly are those people who were once in State Hospitals going?

My daughter isn’t the only person being impacted by the broken Regional Center system. I see good people in that system every day fighting for their clients, only having to tell those same clients there’s nothing they can do. Clients, family members, caregivers, and social workers are all struggling with the lack of funding to support day programs and group homes. The State of California needs to provide proper funding again. I heard they used, but that was a long time ago in a land far, far away…

Maybe that’s where unicorns went as well.

Dear Universe, please help Rhia

Dear Universe,

Please give Rhia a break. She is stressed and sad and no matter how much I try I am unable to do anything about it.

In just the last 5 days we have run into numerous obstacles. Last Friday, she met her new neurologist. Or so we thought. Instead we talked with a person who probably isn’t the correct type of neurologist for what Rhia needs (who knew there were so many kinds of neurologists?). The doctor was kind, but not the right one. She refilled medication that was lost during the MediCal transfer to this county and made several referrals to other specialists. She was helpful yes… but I was really hoping to get Rhia set up in the adult system.

The next day I went to the pharmacy to get Rhia’s medication and learned that MediCal denied it. This medication can help her body maintain body temperature, something especially important in the summer. But it’s expensive so MediCal is refusing to pay. The pharmacy and doctor are trying to solve the problem and I may need to begin the appeal process. Sorry Rhia, here’s another cold pack.

Then on Tuesday I got a call from the Undiagnosed Disease Network (U.D.N.) to discuss their findings. Both Rhia and I had our entire Genome mapped, a process that looks at every genetic code and variable we have in our bodies. And guess what… they found nothing. Not a single anomaly. Genetically everything looks fine. They still need a genetic sample from her biological dad to compare with Rhia’s, but right now, they can’t figure out what is causing Rhia’s disorder. The U.D.N. is the biggest research organization in the entire world specializing in rare and undiagnosed diseases and they can’t find the cause of Rhia’s degenerative condition. If they can’t figure it out, who can?

Thursday was when she started her new program… well, she was supposed to have started. But when we arrived in the morning we learned that the authorization wasn’t finalized. We had a start date and a green light from her social worker, but the program couldn’t let her start without authorization. Rhia has been crying and angry about starting a program for two weeks! She finally agreed to try it… but now… I doubt I’ll get her to try it again.

Universe, Rhia has had one challenge after another since she moved here in October. First her Social Security was cut, then her MediCal delayed. She’s been on waiting lists for programs. She has now “almost” started two. The first start was due to no communication support and the next one due to a paperwork problem. She is stressed, frustrated and lonely. She needs community and something to do. She is trying so hard to grow up and all she gets is slammed doors in her face. Please dear Universe, if you could just give her a tiny break. Something’s gotta give here, and it can’t be Rhia’s mental health. Or mine.

Signed,

Super angry-frustrated-exhausted-sad Mama Bear.

Rhia almost left 8 years ago

Rhia drinking a hot chocolate at Starbucks, age 20

8 years ago, Rhia spent Easter in the hospital, hooked up to IV’s and undergoing too many tests, because she had almost died. Two weeks earlier she’d had the flu, but even when the virus ran its course and the fever vanished, her body didn’t recover. She slept all the time, could barely speak, and her eyes became blank and unseeing. Then she started choking on water. We rushed her to Stanford Children’s Hospital and they admitted her for Metabolic Distress.

It took a couple of days to stabilize her and a full week before she could go home. It was during that time we got an official diagnosis for the cause of her disabilities: Mitochondrial Disease. Her doctor’s had suspected it was “Mito” but until she was hospitalized they weren’t certain. They still weren’t; the tests came back negative but all the symptoms pointed to Mito. The possible causes of her ataxia and degenerative neurological symptoms had been narrowed to the spectrum of Mitochondrial Disease.

But what did that actually mean for Rhia and her health? Would she recover from her medical crisis?

They let her go home when she could swallow water and other liquids again. She still couldn’t eat food, so she was referred to a Speech Therapist to relearn how to swallow again. If she didn’t recover, she would need a feeding tube. Time would tell…

Later, we were told if she reached the age of 20 it would be a miracle. She was 16.

8 years have passed and Rhia is still here. She turns 24 next month, and thankfully she did learn to eat food again. And she’s still walking, although I swear she’s walking because of tenacity, not strength and coordination. She never fully recovered her energy and strength from 8 years ago, but she and I learned to manage her new “normal” and find ways to cope with her increased fatigue. Some days are great; she sings and laughs and loves exploring her new city. Other days she can hardly hold a crayon in her hand. She’ll sit and stare into space as if all her energy is needed to stay upright. It can switch back and forth every hour.

We roll with it because this is a part of Rhia. No matter what, she keeps smiling and I keep trying. Both of us get frustrated sometimes, but we both find a reason to laugh. It’s impossible to stay sad for long around Rhia.

Rhia smiling, wearing glasses, and drawing with a large marker.

How long will she stay here with us? No one knows. Her doctors are amazed and thrilled to see her thriving as well as she is. Who is this remarkable person who keeps surpassing everyone’s expectations? She is my daughter and I am so proud of her.

Thank you for these extra 8 years. I treasure them all. And I will treasure all the years we still have together.