Fire and Flood in the Places I Love

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image via CNN.com

Louisiana. So much water… a luxury to this drought weary California girl who spent a week there visiting the in-laws. I swam in their pool and then took long, hot, guilt free showers. It rained every day and I cheered every time. Even when the thunder and lightning chased us inside, I grinned watching buckets of rain overrun gutters and trenches.

We left the day before the flooding started. If I had known, I wouldn’t have cheered so much when it rained. Right now a large portion of the state is flooding after historic heavy rains. One more flood. One more lost home.

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photo via ABC10 news

In Lake County right now, the town of Lower Lake is burning because of the Clayton Fire. I grew up in Lake County and still love that impoverished, isolated, rural county. My heart is broken for the thousands who are hiding out in shelters, not knowing if they have a home to go back to. Last year Middletown caught fire and most of Cobb Mountain burned. Thousands were homeless. The county was just starting to recover, and now this.

The air in Louisiana smells like green grass and moss. Water drips from tree branches even when the sun shines. The ground stays damp and when I walked on my mother-in-law’s back lawn my feet got drenched in muddy water.

In California, the air tastes like matches. The ground is so thirsty, when I walk in my back yard dust rises with every step. This was a good year for rain, but it wasn’t enough to make up for 5 years of drought.

Whatever water gods there might be, send some of that Louisiana rain to Lake County.

No more luxurious showers; I bathe with my feet in my daughter’s tepid bath water while I quickly rinse off with the shower nozzle. I dream of Spanish moss and dragon flies and damp air.

Do people in Louisiana dream of hard earth and dust storms?

 

Just when you think your career is over…

…something unexpected can happen.

Several years ago, I was injured by a student while teaching. It was an accident, but it left me unable to go back to work. I lost my job, had shoulder surgery, spent three years dealing with Worker’s Comp Insurance, and wondered if I would ever teach again. I teach Orientation and Mobility to visually impaired children and adults. With a certification and a Master’s degree, I am qualified to teach people with vision loss how to travel safely and remain as independent as possible. But with a permanent injury, it looked like my career was over.

Slowly, the pain of my injury improved. It would never go away, but I had learned to manage it and had regained much of the muscle strength I’d lost while recovering. I taught visually impaired adults as a contractor through a non-profit, and although I missed teaching kids, the work felt good. But as the deadline for my certification renewal approached I wondered if I should find a new career. Would getting an MSW be a good idea? Or add another certification to my current one? If I was going to only work with adults, would becoming a Rehab therapist pay better? I even thought I’d go back to school and get my MFA. If I had to double my student loan debt, why not do it pursuing something I loved? There were no jobs locally, so I would have to move and start all over somewhere else, probably out of State.

Then one day, I saw an on line add for an Orientation and Mobility teacher at a school district close to my home. I applied and they called me back that day. It’s a rural community and my combination of skills was perfect for their needs. It was only part time, so that was perfect for me. It felt like a gift. I didn’t have to move, or change careers, or go deeper into debt. Here I thought those three years of grad school to get an O and M Master’s and Credential was a waste of money and time when actually the right job was next door.

Life is funny that way. You can spend hours hunting for answers, but most of the time if you just wait and listen, the answers come to you. You may be convinced your best days are behind you and the future has nothing to offer, but life can surprise you if you let it.

Unfortunately, I do need to renew my certification. It’s due in two weeks. I still have 15 CEU’s to earn. Ugh! If you’ve wondered why I haven’t been writing, it’s because for the last two months I’ve been glued to my computer taking on line courses to earn Continuing Education Units. I decided to renew a little late.

This is another lesson; wait for the answers, but be prepared when they come.

Not the only Mito Kid in the world

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My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.

For the UnMothered Children

  Mother’s Day. Bah! Humbug!

Mother’s Day raises old ghosts.  Those childhood ghosts crash into my bedroom and make me feel like I’m eight years old again and all alone in the dark. It doesn’t matter I am actually 49 and able to take care of myself. The specter of abandonment wanders out of my closet and won’t leave me alone.

There’s no need to explain or share details about my childhood. Those who experienced something similar know how it feels to grow up lost. My childhood doesn’t come close to what other’s coped with, but it left me scarred regardless. It left me with a deep hunger nothing can satisfy. I long for safety, security, and the knowledge my mom will be there no matter what. I accept it wasn’t her fault, but that can’t change the feeling. I’m a mom now, and my daughter has grownup knowing she is completely, unconditionally loved. But my sadness won’t go away.

The sadness gets stronger every Mother’s Day. But This year will be different. Instead of mourning what I never had, I will celebrate what I did. 

I mothered myself.

I grew up troubled but still believed in myself. I was afraid, but kept trying. I learned and grew stronger and trusted despite how many times I was shown I shouldn’t. I taught myself that I matter. I found ways to feel more secure. I made a million mistakes but learned from every one. I never gave up on myself.

Which is what we want from our moms, right?

So this is for all the motherless children. For all who mothered themselves and fell down and kept trying and never gave up. For the ones who think no one will love them. The ones who became parents and figured out how to raise those children. 

Buy yourself some flowers. You are wonderful.

 Happy Mother’s Day to us all. 

The Mito Walk in the Rain

  
100 people gathered in a parking lot at Bishop Ranch 8, San Ramon, California, to walk in support of people with Mitochondrial Disease. For the first time in the five years the walk had occurred, it rained. We stood together under shelters and awnings and waited. Every team had raised money, so we had to honor those pledges and walk. But it was cold and all the teams were missing members.

My daughter Rhia, the person on our team with Mitochondrial disease, sat in her wheelchair under her polka dot umbrella and cried. She wanted to walk, but hated the rain. Her hands were cold even in the pockets of her puffy, blue coat. Her dad finally loaded her in the car and drove her away to find hot chocolate and a movie. So there I stood, the sole member of Team Rhia after the rest of my team had cancelled the day before. 

The announcer called Team Rhia to start walking. I stood beside her. She kept calling. I said, “Team Rhia right here,” and laughed. Then I stuck up my umbrella and walked the one mile route.

Other teams in matching t-shirts gathered and cheered each other. Maybe I should have been sad no one cheered for me, but walking alone was oddly peaceful. 2 wild geese watched me and honked as I passed the half way mark. “Welcome back,” I said and one goose flapped his enormous wings as if showing how far he’d travelled. Because it was just me I made good time and finished the 1 mile route in 15 minutes. Nice not to have to manage a team of wayward walkers. 

Standing in the parking lot again under the shelter at the registration table, I watched as the teams slowly returned. That’s when I felt sad. Why were we doing this? Why were parents who had lost children showing up every year to walk around a business complex? Was this going to make any difference? I saw the parents who’s daughter had died last year at age 14. No cure soon enough for her. Would there be a cure for my daughter? For anyone’s loved one? Would the meager $400 dollars my tiny team had raised do any good? 

What else can we do? We’re not doctors, or God. We are powerless to change what our children endure. Maybe walking alone in the rain looks pointless, but it gives us something to do and we support each other. We are all gathered together in a parking lot in San Ramon because for a few hours each year we are not alone. We have hope.

I opened my umbrella and made another lap. 

Why I won’t run to Canada

My daughter cannot move to Canada; she has multiple disabilities so is considered a drain on resources. No country anywhere will accept her. She is a disabled woman trapped in the United States, a country that doesn’t want her.

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(photo by Diane Davis https://www.facebook.com/dianedavisphotography/info/?tab=page_info)

So when you talk about moving to Canada if Trump wins, think about what that means. Think about the people who don’t have that option. They are the people who need you to fight for them.

The ability to leave a bad situation is often based on ones resources. Do you have the money to go somewhere else? Do you have people who will help and protect you? You might wonder why a  person living in a bad neighborhood doesn’t move to a better one. Many times, they can’t. If you can, you are blessed. Don’t assume others have the same chance.

My daughter is one of those “losers” Donald Trump talks about. She can’t work and she is dependent on other people to care for her. I am one of those losers because I need social service supports and welfare to help me take care of her. Call me a welfare mom and I’ll agree proudly. We are not “winners,”as Trump would say, and there are a lot of people in this country who are the same.

But that doesn’t make us bad people. That doesn’t make my daughter worthless.

My daughter can’t fight for herself, but I can fight for her. And I will stand by her and fight with all my strength to protect her from the rise of hate and intolerance permeating the United States. Racists and fascists will not touch her.

Will you help? Or will you hide?

Rare Disease Day 2016 


What is it like to live with a rare disease? This is what my daughter says:

“Doctors try to help but no one does.”

“I don’t know why I have ataxia and I don’t know why I can’t hear no more. No body does.”

“I have to go to the doctor a lot. That’s boring.”

“Everybody wants to poke me and give me a blood shot (blood draw)!”

“I used to be able to walk and not have to use a walker all the time but now I can’t and nobody know’s why.”

“Why is there no medicine to make me feel better?”

As her mom, I struggle to answer her questions. But what can I say? She is now 20 and has lived with an undiagnosed mystery disease her entire life. The closest label her illness has is Mitochondrial Disease. But which one? What type? How degenerative is it? How long does she have?

We don’t know.