About
I was born different. No one knew at the time, but a glitch in my genetic coding would shape my entire life. I walked late. I was clumsy. I slept a lot. I was also happy, fun, and resilient. My parents took me to doctors for answers, but no one could explain my high arches, absent reflexes, or general clumsiness. I was a child with an undiagnosed condition. I was told to try harder, pay attention, and believe in myself. Of course, none of those things helped.
When I was thirteen years old, a routine screening for scoliosis at school found a curve in my spine. I was sent to UC Davis for evaluation. There, the doctors had a hundred questions about my feet. After a nerve conduction test, they finally diagnosed my lifelong challenges. I have Charcot Marie Tooth Disorder, a hereditary neuropathy that affects muscle strength, coordination, and balance.
The diagnosis changed my world. On one hand, I had to adjust to a degenerative and incurable condition. On the other hand, I had a story to explain my challenges. That story brought huge relief.
For the next twenty years, I adapted to my challenges. I earned a teaching credential in the Los Angeles Unified School District. I met my wonderful husband. We moved to the Sierra foothills in northern California. We had a gorgeous daughter. I taught full time. I traveled and created art and kept my challenges in the background of my life.
Then, when I was thirty-three years old, everything changed again. I developed chronic pain in my feet. The high arches (which doctors always said would need surgery) had worn away the cartilage. I had arthritis. My fingers went numb for days, then weeks at a time. I met with my neurologist, then physical therapists and podiatrists and hand therapists. Everyone said that my life as I knew it was over. My body wasn’t able to keep up the pace anymore.
At thirty-three years old, I effectively retired from teaching. For a few years, my life was all about loss. Loss of physical skills, loss of work, loss of dreams. Those were tough years.
However, the radical changes in my lifestyle brought about positive results. I earned a MFA in Creative Writing. I wrote stories and novels. I had more time to heal and gather energy. The pain was no longer acute. I could manage symptoms by paying attention to my choices. The crash led to empowerment. And, in 2008, I had another child, my incredible little boy.
Disability does not go away no matter how I might want to ignore my challenges. The ongoing demands of managing my health wore me out again in the winter of 2010. I had insightful conversations with friends. I researched alternatives to my usual patterns of coping.
Discovering the Disability Rights and Independent Living Movements meant everything to me. When I shifted my mindset from battling obstacles to engaging in compromises with my challenges, I found my emotional outlook improved dramatically. I saw that my friends and my students needed a place for positive conversations about living with a disability. We needed a community. I developed this website. I recorded the first weekly podcast. Connections are everything.
That winter marked another milestone in my journey. This is the time that I own my story. Allow myself to see my disability as a strength. Take pride in my challenges. And encourage others to do the same thing. We will change the world.
The world will be a better place. All that we need to do it take the leap. Tell the story. And believe.
I look forward to sharing the journey with you. Email me here.
Thousands of candles can be lit from a single candle,
and the life of the candle will not be shortened.
Happiness never decreases by being shared.
-Buddha
I am the leaves. I am the tree. Ever changing. Ever the same.
~ Lenka
What an inspirational life story. Keep dancing!
Thank you so much! I’ll dance the days and nights away
Hello there ~ I listened to you today on Leo LaPorte and you are obviously very inspirational to many.
Your site is terrific! Wish I knew how to do all that cool stuff.
I write about kids of all ages. My only goal here is to make life better for all children and hopefully I am providing helpful information for them to gain a more forceful and positive hold on the secrets to a better life.
I have a blog that no one comes to, though I write on it often. Have no clue why it is bad………….do you have any suggestions?
Would you mind checking it out? And if you have time……..give me some feedback. HOW I would appreciate it!
Most Sincerely,
Maureen
http://MEAOnlineEdge.blogspot.com
name isray toth i heard agbout mydisbilitycommunity.com on leo laport site i have in il can email me i cna help you with the podcast if like im disability and been throw it all i have austic wanted to get thsi out to you so if need a co host cna help you out with disability podcast and my mom is blind also i know were to get proucts an stuff disability people cna use hope can help you with the podcast also i have talkshoe and would give my show to you on sunday since i work ever day untill sunday or should i ssay sunday im off i live in il can take live call thay do rss feed even in itune also if want thsi let me knwo i cna set it up right a way i have aim msn and yahii im name email me if need ten or if i cna help you out think great idea thanks
Thanks for the kind offer! I have friends on the autism spectrum and work with a lot of kids. I find every disability brings huge gifts to our world (along with a few challenges). The live calling sounds fascinating. I’m not ready yet since I don’t have a set time each week. Once I get that set, I’ll contact you for sure!
Where do you find good stuff for disability products?
Thanks again for writing me! I look forward to working with you! Take care, Lenka
I’m going to your blog right now!! My husband (my tech guru) recommends, first of all, going to godaddy.com and, for $7 a year, you can get a custom domain name- coolkids.com or whatever and it can forward to your blogger site. Use the coupon code PUPPERS3 to get the cheap rate.
I’ll be commenting for you! Maybe we can link to each other, too
Best wishes! Lenka
Hi, I also heard you on Leo’s show. This is an awesome site. I can tell you have put a lot of time into it.
I have been working online since the beginning of the internet back in the 90s. I was the very first person to ever do support/customer service with a live voice conference room for a large company. It was great, and I still do that today. I believe every company no matter how small or large, need personal contact with their clients/customers with as many forms as possible. Using the internet makes it global. I have very little vision, but very few people know that. A funny story, my first room was called The Millionaires Lodge. We had a nice picture of a room with a fireplace and a rug in front of the fireplace. One day I decided to through a party in the lodge and we would play music and just have a lot of fun. I sent out an e-mail inviting everyone in the company to come. I got an e-mail back from one person telling me he would not be able to attend because he was in a wheelchair. I wrote back to him and told him we were handicapped accessible. He did come to the party, and after that day came back often.
I would like to talk to you about a fundraising program that I am involved with, that doesn’t cost anything, but non-profits can make a lot of money. My number is 303-757-1132. Ask for Susan.
Hello Susan,
Thank you for contacting me! I will be giving you a call. To me, information is going to give a lot of people the ability to try new things with confidence. What adventures we’ll have!
I look forward to working with you! Thanks again and best wishes, Lenka
Hi Lenka,
I just heard you on Leo LaPorte’s Teh Tech Guy program. All I can say is Wow! I am so impressed with you, your site and your goals to podcast to inform. Your are a wonderful, beautiful person. You’re a shining star and a great inspriration to all (w/ disabilities or not). Keep up the great work!
Wow, Mark, thank you so so so much!! Your words mean a lot to me!! I hope to keep up the momentum and have fun along the way! Best wishes! Lenka
Hello. Great job. I did not expect this on a Wednesday. This is a great story. Thanks!
Hi Lenka, I also heard you on Leo Laporte’s The Tech Guy podcast.
I am disabled also ( multiple health problems & disabilities ). Recently, one of the groups I belong to ( for one of my disabilities ), had a discussion about starting a web page, and a Facebook page also. So we could educate everyone about our disability.
I am passing your website link on to other people that might be interested.
Take care,
Jamie
Hello Jamie!
. There are great free services to start one- such as wordpress or blogger or blogspot. Let me know about your facebook group too- perhaps I should build a facebook page for my disability community 
Thanks for finding me! I believe that a lot of people are coming together to share and support each other on this journey with a disability. I’d love to see your webpage when it’s up- let me know
Thanks for passing on the link. I look forward to visiting your future creations!
Best wishes, Lenks
Hi. heard you on the tech guy.
My wife and three and a half month old daughter were in a severe car accident in 2006.
My daughter is fine, but my wife is now severely disabled.
She has lost the functional use of her arms and legs and hands.
Recently I got an Ipad, and was really pleased to find that my wife has enough control to turn pages on the book reader in it. I have been really trying to find a way to just give her the ability to use a computer or read a book. She lacks the fine motor skills to click on small buttons, but she can swipe her hand across the screen to turn pages.
I have ordered a couple of different small music stands that I hope to set on her chest with a lanyard around her neck to steady it. I will let you know how this works.
Hello Bruce, Thanks for your comment. I had thought the iPad might be useful for things like that so it’s great to hear that it works. I was excited about the larger virtual keyboard because the smartphone size is tricky with my fine motor challenges- lots of typos
I’m sorry to hear about the accident. I send lots of good wishes to you and your family.
It sounds like the iPad may open a whole new range of abilities for her. I don’t know how her communication skills are, but I noticed there was an app that gave touch-screen communication abilities. Definitely let me know how everything works out for her and you. I have my fingers crossed. I can imagine how reading would be such a gift. Simple things matter.
Best wishes, Lenka
This was really interesting. I loved reading it
Hi Lenka,
I’ve just stumbled across your website through a link to your podcast ‘CMT stories with 3 special guests’ and I’m really enjoying exploring it.
I live in Oakland, CA – so can’t be too far from you. I wanted to send you a link to a project I’m running in hope that you might be interested in participating. It’s a somewhat unusual approach to raising awareness for CMT through inventing musical instruments.
This is the project website: http://www.timjohnphillips.com, and this is the blog where all the writing is: http://www.cmtcreatesmusic.blogspot.com
I’m really enjoying your thoughts and comments, thanks for putting in the effort to get them out to the world. Please let me know if you think you’d like to participate in the ‘CMT creates music’ project, (cmtcreates@gmail.com) I’d love to hear from you.
Best wishes,
Tim.
Wow, thanks! I read a bit of your blog and the project sounds fascinating! I’ll be in touch
Best wishes!
I really like your writing style, excellent info , regards for posting : D.
Hi! Appreciation for the nice posting. Keep it up!
Lenka, I found your blog through prettyshoes.
I’m a 30 year old mom of two with CMT, and trying to make the most of my life while battling this disease that most of my friends and people around me dont even know about.
Glad to have found you! Hope to be in touch!
Hello! Nice to meet you! I found your blog and I look forward to getting to know you, too. It’s a rough road sometimes and us CMT moms can help each other a lot. You’re so right, it’s especially hard when people have no idea what CMT means. Hopefully all of our online chatter will start changing that
Best wishes!
Hi Lenka!
I found your website through Michele, and I must say I’m very impressed! I am a 29-year old mom living with CMT, and I also have a child with CMT. I love the way you word things, and I find myself thinking, “She explained exactly how I feel PERFECTLY!!” Thank you for your words! I have my own blog, which is still in it’s beginning stages, but I’d love for you to check it out.
I’m also very interested in the podcast that you do. My husband does a podcast every week, so I was very intrigued when I heard you did one. How could I go about listening (or even getting involved in whatever way would be helpful)?
I look forward to keeping in touch with you!
Melissa
Hi Melissa!
I’m glad that you found me! I will follow your blog for sure. One of my big troubles awhile ago was feeling very alone on this journey. I love my online CMT community for changing that. It isn’t always easy to be honest, but I have to tell the truth. Otherwise, how will the stories be told? I’m glad they resonate (makes me feel better, too
).
I’m glad to hear from another podcaster, too. The past few months have been tough. We lost a couple due to technical difficulties which was very frustrating. Now we need to configure everything to Lion (on my Mac). I hope to get one posted again soon. Our Archives Page has all of the past episodes, and iTunes has the past ten or so.
I love doing the podcasts, though. Hopefully I’ll get to revive a routine soon.
I look forward to getting to know you! Best wishes, Lenka