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.

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.

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?

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.

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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?

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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.

When you’re teaching at a medical conference, listen to your audience!

After the UMDF conference last year, I thought about all the people I saw with a vision impairment. How could I help? I submitted a proposal for a workshop addressing the needs of people coping with vision loss and their loved ones. UMDF liked the idea and put me in touch with the head of the L.H.O.N. group.

L.H.O.N, which stands for Leibers Hereditary Optic Neuropathy, is a vision impairment caused by mitochondrial disease. Even though I’m an Orientation and Mobility Specialist with a Master’s Degree in Vision Impairments, I had never heard of this disorder (more about L.H.O.N. in a later post). Maria (Girl Gone Blind) and I talked on the phone and she helped me develop my presentation. I would give the talk twice, once for those affected by L.H.O.N, and again in the general assembly for anyone dealing with other forms of vision loss. I put together a Power Point presentation, wrote my bio, packed my suitcase, and flew to Washington DC (Alexandria, VA to be exact. Just across the Potomac river).

People asked me if I was nervous. Funny thing, I wasn’t. The idea of talking to a room full of interested strangers didn’t worry me at all. I have information, I love to teach, they want to learn… perfect. However, as I stepped in front of a crowd of people with a vision impairment and their loved ones, I suddenly felt afraid. What did I have to offer these experts? They were living with vision loss while I’m just a teacher who can show them how to travel with a white cane.

That’s how I began. I focused my talk on communication between the person with vision loss and their family and friends. The only way to be an effective partner is through respect and communication. I did an abbreviated demonstration of Human Guide technique and moved on to how to support a person with vision loss in crowded and unfamiliar areas. Basically, “don’t ditch your loved one at a party.” After my talk I heard mixed reviews. Some people gave me a big thumbs up and said it was “great.” Others felt I didn’t present anything new and was “preaching to the choir.” I realized that mostly the people who thought it was great were people without vision loss. The people with vision loss were mostly bored. Oh well… like I said, they’re the expert.

The next day I gave my talk to the general assembly. However, as I began talking about supporting your loved one with vision loss, a woman raised her hand and asked, “Is this just about blind people?” I was afraid that would happen. The conference program left out vision loss in the description. Standing in a room filled with people looking for information about wheelchairs, walkers, and coping with changing mobility, I realized I had no idea what to say. So I took a deep breath, threw my notes aside, and started talking about my own experience working with my daughter and her changing needs. I also talked about working with older adults and how they struggled as their needs increased. Thankfully my audience started talking and sharing stories. I stepped back and facilitated the conversation. Dropping my teacher role, I became the advocate, a role I’ve played for 20 years. Once again, I was not the expert in the room; the people sharing their stories about declining mobility and strength were the experts. My talk went in a completely unexpected and unplanned direction and I loved it!

It’s funny that I was more nervous with my planned talk in front of an audience of mostly visually impaired people than I was winging it without notes. All those years I spent doing improv paid off. I used my theater background, advocacy and mediation training, and what I’ve learned being the parent of a child with a disability, and just followed my gut. But if the people in the room hadn’t starting talking, I would have been screwed. Once again, thank you experts!

I hope to give more talks in the future. I love teaching and interacting with people. My next topic will be on advocacy and independence. Need a speaker?

My next blog post will be about the day I spent lobbying for health care on Capitol Hill. This just happened to be the week the vote on repealing The Affordable Care Act was being debated by the GOP.  Interesting adventure.

 

Looking for Hope at the UMDF Conference

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(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.

 

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.