Welcome! Lenkaland shares my adventures in creative photography, raising two kids, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

Job Loss: CMT Wins

JobLossGraphic Today is Friday. And I am home. CMT wins.

The real world is here. Knocking at my door. I would like to make it go away. I would like to pretend I am not home.

Writing on this blog opens windows.I like to show the good stuff. Bright days and laughter. I like to share joy.


However. I also want to be honest. If I share real life with CMT, perhaps a doctor will be inspired to research. Perhaps that new diagnosis will feel less scary. Perhaps people with CMT won't feel alone. We are not alone.

I havent been writing about my challenges lately because naming them feels more real. And December is a crazy marathon of denial. Between holidays and fairy-crafting, I decide to manage my CMT without managing CMT. My goal is to ignore it as often as possible, by any means possible. Sugar, caffeine, salty snacks, medicine. Whatever gives me a means to an end. And the end is getting away from CMT.

January arrives and I land. I must accept reality. I must answer the door.

This year begins with an ending. Many years ago, CMT forced me into an early retirement from a job that I loved- teaching young children. Pain and fatigue meant that I needed to slow down, drastically. I taught part-time. First a few days a week, then a couple, and this year I was down to just one day.

Until now. I have officially resigned from classroom teaching. Starting today. And I blame CMT.

Now, those who visit here often know that I am a positive person. I see the light in my generous, wonderful life.


I have such gifts and I wouldn't trade any of them. At the same time, CMT is a devious disease. It can be easy to overlook. Others have it worse. Yes, much worse. I know that. I appreciate each and every day with my family on this journey.

Yet. Yet, the world is losing a lot to CMT. The world is losing teachers and artists, scientists and inventors, doctors and dreamers. This disease saps strength. Not just the physical strength of nerves and muscles affected by our faulty genetics, but the mental, emotional, and creative strength required to manage this disease day after day after day. Thousands of us face our challenges with grace and courage day after day. We make it look easy. When it asks everything of us.

One of my goals this year is to raise awareness. With writing. Photographs. However possible.


I feel so conflicted whenever I write about CMT, honestly. I want to be an advocate, I want to be a positive force of change. I want to change the world :)

I also like to stay in my quiet space. Carry my story on my own. Because one sentence out of context and I sound whiny or petty or grim. I must be brave. Because I do want change.

Anyway. The story with my teaching is that I reached a place where I had to weigh my heart's work against my physical limits. I loved teaching. My students and I explored and dreamed and learned.

But the next day I paid for my efforts. Every time I saw a doctor or physical therapist, they gave me the look when I said that I was still working part time. "How's that working out?"

Fine, just fine. Not fine.

Years ago, my hand therapist said that someone 'with my challenges' (meaning weakness, fatigue, and easily injured) could expect ten years in an active profession like teaching. This was my fifteenth year. So I pushed the limits. And CMT kept pushing back.

It has reached a point where the stress and effort just isn't worth the rewards anymore. I need to take care of myself in a big way.

And I know this isn't the end. I see great opportunities for writing. I will teach, maybe after school or specialty classes that only ask an hour or two a day. Things that will let me be involved on terms that CMT can accept.

CMT is degenerative. I have known since my diagnosis that it would get worse and worse. I would lose more things. And each thing brings grieving. I didn't expect this grief, actually. Don't we all want to quit our jobs? Watch movies and eat bon bons?

No, not really. Not when reality comes knocking.

So this Friday is heavy. I feel the weight in me when emotions swell and I realize how much I would rather be there, in class, reading stories and sharing ideas. Laughing and learning with the children. CMT has taken that from me.

Yes, I am creative and positive. But this year I am also committed to sharing real life with CMT. My CMT. I get frustrated, angry, and scared. I feel small on days like today. I appreciate our community. Here and on other social networks, I appreciate the support and understanding.

I can accept limits. Without letting CMT win. It's a challenge.

Challenge accepted :)

I will be brave. Live my truth :)

How lucky I am having something that makes saying good-bye so hard. ~Winnie the Pooh

PS- hopefully a post is coming soon sharing the pool photos. We visited friends who live in a community with a heated pool last weekend. Such a treat!

I must balance grieving with adventure. I love memories of past fun and plans for future happiness :)

wpid10408-jan2014lenkaland-2.jpgWishing you a joyful Friday!


The Disability Community Podcast is Back!

The Disability Community Podcast is Back!

Project 365: 2013

Project 365: 2013