Thursday, November 12, 2009

Queen Teen reaches burn out. Now what?

A few days ago, Queen Teen walked into my room and announced, "I don't wear my glasses anymore."

I'm used to these types of proclamations, I mean, "Queen Teen" is more than just a nickname. It's a way of life.

"You don't?" I said.

"Nope. They don't help me so I don't know why I gotta wear them."

"Because your teacher asked you to. She says they seem to help when you're working on your computer."

"Well, they don't. So I'm not gonna wear them anymore." Before I could formulate a response that would, A-encourage her to wear them, and B- remind her that she needs to do what her teacher tells her, she moved on to a new topic. "And my hearing aids don't do nothing either, so I don't know why I gotta wear them."

Pick your battles, I thought. At this stage in the game, the hearing aids are more important. "You're hearing aids do help. You seem able to hear me better with them on."

"No they don't. They just bug me."

"I'm sorry about that, sweetie. We'll go to the audiologist again and she can fix them for you."

Queen Teen shrugged. "It don't matter. I don't need to wear them. And I don't know why no body can do nothing about my ataxia. I hate my ataxia, and nobody can fix me."

"I know. It's really frustrating."

"Yeah." She leaned forward and shouted, "I wish somebody could make my ataxia just go away!"

I gave her a big hug and said, "Me too, baby."

"It's what I wish for. But I guess some wishes are too big and can never come true."

Biting my lip, I forced myself not to cry. What the hell can I say? Everything she's saying is true. Her glasses only help a little, her hearing aids barely help at all, and her ataxia is worse the older she gets. She used to be able to walk without using a walker but now she has to use the walker constantly, even in the house. She used to do her exercises religiously, but now has given up on the idea that strength training will make her better. I encourage and bribe her to keep going, but she gives it a half hearted attempt, lazily doing sit-ups and quitting before she's really taxed.

Queen Teen is burned out, worn out, frustrated and depressed. Nothing has made anything better, not the surgery, the knee braces, the exercises or the therapy. Not the glasses or the hearing aids, not the amino-acids or the walker. She's lost that stubborn gleam in her eye that embraced each new challenge with excitement. Of course I'll get stronger, she used to believe, as she did 20 sit ups. Now she doesn't care.

What can I do to help her? Even an adult would feel this despondent, so how is a 14 year old child supposed to cope? When you realize that all your efforts won't change anything, that things are exactly what they are and you must live with them, how do you keep moving forward? I hit that place a couple of years ago and spent months in a depression so deep I was afraid I might not drag myself out. Eventually I did, because Queen Teen needed me to. What will help Queen Teen learn to live with herself and bring that wonderful fire back into her eyes?


Elizabeth said...

I'm so sorry to read this. I can't imagine struggling with both a disability and a feeling of depression. I am wondering whether you've ever looked into yoga and meditation with your daughter. She seems so bright and strong and resilient -- perhaps a different focus might help? Forgive me if you don't want advice -- I'm all ears as well.

terena said...

thank you for the advice, Elizabeth. I do indeed need help with this. Yoga and meditation is what helped pull me out of depression, so perhaps she's old enough now to understand and try it herself.

leah said...

Some things are so difficult- especially for a fourteen year old girl. If there were other kids in your area with the same struggles, then she could have a "venting" outlet for her frustrations.

I wonder if writing would help her work through some of her thoughts and feelings?

macmike said...


My name is Michel Beaudet, I'm 47, have FA and live in Quebec, Canada.
I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and
there's also a website full of info at

International Network of Ataxia Friends is a mailing list for ataxia patients and family which serves as a support group and information exchange vehicle. There are currently over 680 subscribers from more than 40 countries worldwide.
Subscriptions to INTERNAF is free.
For info on how to subscribe, go see, or
for email only access click here and send: or
for full yahoogroups features access go to

ps: Don't hesitate to email me if you have questions about internaf
Michel Beaudet
Internaf - INTERnational Network of Ataxia Friends