Terena Scott's Blog, page 12

Not the only Mito Kid in the world

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.

(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.

In my own world, writing

Blogging? What’s that. Right now I am immersed in my own, silent writing. I’m hidden away in a world I’ve created through language and ink. It takes focus and dedication to create this world, so I don’t want to wander away for even a brief moment. If I do, I might lose my way. After months of false starts and ideas, I’ve found the path through my own little forest of creativity. Writing it down is like following a candle’s flame in the distance; keep the light in sight and you won’t get lost.

Occasionally I need to trust I’ll find my way again and leave my own world. The real world with all its problems and joys grabs my attention. It’s a tricky balance: imagination and practicality. I need to stay grounded and aware of life, while at the same time protect solitude so I can write. I don’t want to tune out reality so much that I lose touch with time. But I also don’t want to get bogged down in bills and politics so much my imagination suffers. My awareness is juggling intuition. I write, therefore I am.

Because time to write is such a struggle, I tend to hang on to that state of mind with all my might. Nooooooo… I don’t want to pick up my daughter from school or return a phone call or wash another towel. I want to lock myself in my room and write. I’m a mother and a wife and a dog owner and I have a garden. I love my family, but just like all moms, I tend to give them all too much. So I cling to writing as if it’s the only thing that’s really mine.

When I’m engrossed in writing my book, I don’t blog. I know we’re “supposed” to; gotta keep building that audience and platform, the experts say. But when writing time is fleeting, it’s hard to care. I just want to write; let my readers find me on their own.

My own writing world is calling. Time to chase that candle flame again.

A third into my book I have to ask: what am I writing about?

Writing, writing, writing… wait. What am I writing? What is the point? Who am I writing this for? Why am I writing this book?

Ak!

I was doing really well for several weeks, writing every moment I had in bursts of focused energy. The first section of my book finished, six lovely chapters focused on the first few years of my daughter’s life. And then…

The focus vanished. The doubts set in.

One complaint about “special needs memoirs” is how parents take over their children’s stories and make it all about them. The child is lost under the parent’s struggle. I don’t want to fall into that trap. My daughter is the one who struggles daily with her disabilities. This is her life and I am telling her story in the hope it will help others. But am I actually including her in the storytelling, or just rehashing my own fears and triumphs?

I don’t know.

So now here I am, staring at my screen and the 100 pages I’ve already written, unsure whether or not to continue. Do I stop? Start over? Keep going? Chuck the whole book and go back to writing plays? Am I able to write the book I envision? Perhaps I don’t have the skill. But I have to try.

I’ll follow my own advice and go back to that basic question: who am I writing this for?

Answer: Parents of children with disabilities.

Why am I writing it?

Answer: Because I want to help them find joy raising their children and not be overwhelmed with grief and fear.

How will I do that?

Answer: I don’t know.

Any ideas?

 

 

Goodbye David Bowie. I will always love your music.

Christine and I were best friends our freshman year in high school, and one day she played a David Bowie record for me. Of course I knew who David Bowie was, who hadn’t heard his music in 1982? But I had never actually listened to his music until that day when I was 15, lying on the floor of my friend’s bedroom. Her room was decorated with Bowie posters and she explained why she loved him so much. After then, I did too.

Here is one song I fell in love with. His voice is brilliant.

Before then, I knew David Bowie as Ziggy Stardust, a bewitching gender-bending artist I listened to as a kid in the 1970’s.

David Bowie’s artistry, voice, creativity and innovation earned my respect. He stood by his work and continued to push the boundaries of art, gender, and music. Never one to just settle on his laurels and make cash, as some musicians do when they reach a certain level of “legend,” David Bowie continued to create art. He was one of the greatest artists of the 20th and early 21st Centuries.

Thank you Mr. Bowie for sharing your genius. And thank you Christine for sharing his music with me.

I wish you had more time, David Bowie. Imagine what you could have created.

I hate cancer.

Permission to Rest More

I slept this week. Every chance I got, I curled up under my warm blankets in my comfortable, old fashioned iron bed and willed myself to dream. Dishes piled up, laundry didn’t get done, and writing ceased. Instead, I snored.

After weeks of illness, the holidays, my daughter out of school and interacting with lots of people, my cold turned into a sinus infection. My doctor prescribed antibiotics and I reluctantly filled the prescription. But rather than taking one when I got home, I set the bottle of pills on my bedside table and took a nap. When I woke up, I asked, “What if I gave myself an entire week to sleep as much as I want? Will I get better on my own?” Deciding to find out, I set the meds aside. For one full week, I would drink tea and sleep.

Instantly I felt guilty. Shouldn’t I just take the meds and get better? I had a thousand things to do and a book to write and Christmas decorations all over my house. If I took antibiotics I’d probably be better in two days instead of a week. Giving a week to rest is an indulgence I couldn’t afford.

Or could I? My daughter went back to school, and although it’s true I work hard as her caregiver, there were several hours each day I could spend in bed. Besides, my body ached with fatigue and my lungs burned from coughing. My head pounded. Whether I wanted to accept it or not, I was sick and needed rest. Why not rest fully?

Grabbing my iPad, I climbed back into bed and watched Poirot Murder Mysteries on Netflix.

A funny thing happened over five days. Not only did my cough slowly improve and the pressure in my head subside, but my stress diminished. My cuticles healed because I wasn’t biting them so much. My eyes weren’t so dry from staring at a computer screen all day. When the phone rang, I didn’t jump and when my daughter needed me I had more patience. Not only did my body need rest to recover from illness, my body seemed to need rest to recover from 2015.

My head feels better now, but I might have an infection. I’ll give it time. From what I’ve read, antibiotics only cure sinus infections about half the time, so resting may be just as effective. But rather than killing off all the bacteria in my body and starting over, I gave my body a chance to kill bad bugs on its own. We’ll see if I still need antibiotics.

Rest is a luxury we can all use. I know I’m lucky to have the time; not everyone can ignore their work for a week. Realizing this, I don’t take rest for granted. It is a gift my daughter has given me. It’s challenging caring for a person with disabilities, but there are hidden gems in the work.

Next week I’ll jump back into my regular schedule of teaching, writing, running my press and managing the chaos. I’ll battle Social Security to make sure my girl has everything she needs. But right now, I’m going back to bed with a good book. Ahhhhh, heaven.

This writer is tired of epic years.

As a writer, I should enjoy adventure, drama and changes. Good stories come from epic years, those years in your life when everything falls apart and is rebuilt, transformed, and reborn. Pick up any novel and there will be chapter after chapter of drama and cliffhangers.

Living an epic isn’t as much fun as writing one.

2015 was one of those years when I wondered if I actually was a character in a book. Was I up a tree having rocks thrown at me by an invisible writer? I had adventures, like going to New Orleans during Mardi Gras (talk about adventures!). I had bitter-sweet moments, such as when my daughter graduated high school in June. And there was great drama as my husband and I faced death with his cancer diagnosis. We laughed, we drank, we cried and fought and dreamed and hoped. I learned more about my self and how resilient I can be in one year than I had learned in 5.

This writer is overflowing with stories. I’d like 2016 to be a quieter year so I can write them.

From talking to friends and family, I am certainly not alone. 2015 tested everyone I know, some in just as epic ways as I. Illness, accidents, divorces and deaths happened with such frequency we’re all jittery from shock. Four people in my immediate circle of friends and family passed this year, including my own grandfather and my daughter’s grandfather. Cancer popped up in two acquaintances, and I had my own cancer scare when a tumor was removed from my forehead; Thankfully it wasn’t aggressive, but it was malignant.

I am sick of cancer and illness. I want my loved ones to be healthy this year. I want relationships to stabilize and love to grow. I want people to calm down and stop reacting in fear and anger. I want calm so we can heal from a too epic year.

Happy New Year everyone. May 2016 allow you the time to breath.