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.

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.

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.

Is there a difference between gratitude and happiness?

This summer, I began a 150 day happiness challenge on Facebook. Every day I would post something that made me happy. It felt important I do this because I was overwhelmed with fear and anger from my husband’s cancer. Suddenly, I was the caregiver for two medically fragile people, my husband and my daughter, and the emotional toll made getting out of bed difficult. So I started looking for things to make me happy.

Quickly, the exercise felt phony. Very little made me happy. Writing about the joy I found in my morning coffee was silly, and how many times could I write about my garden? Happiness? What was that? I was happy just to get through the day.

Then I realized that I was actually writing down things I was grateful for. Having that morning cup of coffee helped ease me out of bed, and I was grateful for that. Watching my garden grow filled me with gratitude because I could feed my family while supporting wild bees. Gratitude was the best I could do. Happiness was like chasing a mirage.

What is gratitude? To me, it is an awareness of the gifts I have in my life. The simple things, like a warm bed, health insurance and the internet. I am grateful my husband’s cancer seems to be gone and I am grateful my daughter is thriving in her new school. I am grateful for her teachers. Grateful my car is running and I can afford new tires for winter. These things don’t make me happy; they make me grateful for my life.

As the weeks went by and I forced myself to post a gratitude, an interesting shift in my awareness occurred. The more I focused on gratitude, the more I felt happiness. Where did this happiness come from? Circumstances hadn’t changed. My husband still struggled to recover and my daughter still had bad days, but she also had good ones. There were days I wanted to cry from the weight of the emotional load I constantly carried, but on that same day I’d smile watching the dog chase leaves across the back yard.

I am not in denial; things are bad. Frightening. Cancer lurks and my daughter could decline any time. Money is tight and I still don’t have job. The future is one big scary unknown and the odds aren’t in our favor.

In searching for any small, random thing I felt grateful for, I uncovered a rich source of joy. Happiness fluctuates. But gratitude is constant. WhenI feel happiness has vanished and I’m left alone fighting my battles, gratitude holds me up. I am grateful for my strong, weary body. I am grateful for love. I am grateful it rained today.

Or is there really any difference between gratitude and happiness? Can you feel one without the other?

Forget “permission” to rest, I’m being forced to rest.

diagram of shoulder impingement from orthogate.com

Four weeks ago, I had shoulder surgery; no rotator-cuff tears, thank goodness, so I’m healing fast. I was trying to rest before the surgery, but my idea of rest was organizing 8 months of paperwork and staying up late editing manuscripts. Then came my surgery and suddenly, I was slammed hard into bed, wacked-out on pain meds with my shoulder in an ice machine. My body demanded rest, or else! So I lay there and slept.

Four days later, I was out of that bed and working my butt off in PT, pushing the limits of pain. “What pain is bad pain?” I asked.

“Let the pain be your guide,” my PT said.

“It always hurts, so when do you know to stop?”

“If you feel a sharp, jabbing pain, stop.”

Oh, that kind of pain, I thought. But if I push through it just a bit, I can get past that being-stabbed-with-a-stiletto-blade-pain and stretch further and get well faster. How else will I get strong again?

Which is how I ended up back in bed with my ice machine, crying like a ten year old girl with a broken arm. “But I need to get better! I hate being so weak! I hate asking for help! I want to do it myself!”

For some insane reason, I was forcing a year’s worth of PT into 3 weeks, thinking that if I worked harder and ignored the pain, I’d be back to normal faster than anyone ever has been before. I am that psycho in spin class who will work so hard she throws up just to prove that she’s the fastest person on a stationary bike.

Yes, I’m an idiot.

My body is forcing me to rest. “Relax”, it says, “Lounge. Listen to the pain, and slowly do your exercises. Give it three months before you push it so hard. Or else!”

Or else what? I ask my defiant body.

“Or else I will shove you back into that bed where you won’t be able to do anything but watch reruns of General Hospital and beg for mercy.”

Ok, ok… I’ll listen. I promise.

When the body commands, the ego must obey.

I know I’m not the only person who pushes herself so hard (I’ve seen you other crazy people at the gym). How do you make peace with an injury, or your physical limitations? How do you care for yourself? What does your body do if you don’t?