I reflect on CMT Awareness month and how I have more questions than ever about an ever-changing disorder.
I saw the Dolphin Tale movie with Anika and I share thoughts abut our reactions.
Then, the iPhone 4S for the disability community. How well can it correct my many typos? How useful is Siri, really? And can a smart-phone make my life better, easier, healthier, and more connected?
Is that too much to ask?
Enjoy!
Oh, and an awesome poem by Cristal! Mutants of the world, unite
Anika and I went to the movies today. Hurrah! That was a treat in itself. I heard that the dolphin movie was worth seeing. And I expected messages of injury and recovery and people helping. But I was surprised by the disability stories. Rewirting the disability story from a tragic, loss-focused sadness to a chance to transform. Change.
But they wove a human story alongside her story in the movie. As her human friends saw how she rejected attempts to help her, they saw their how their own pride held them back instead of helping them move forward. I thought about myself, and how I resist my own braces. Saying I don’t really need them. I’m fine. But perhaps I am causing damage down the road by overworking muscles.
There were some great lines and I don’t want to give anything away just yet since the movie is new in the theaters. Maybe when it’s out on video I’ll reflect again with more details. For now, I was surprised by my own reactions. The movie-makers wanted to trigger emotions. Of course. But I also felt that this movie spoke to me.
Just this morning, I dreamed that, one day, characters with disabilities would have leading roles in the shows my daughter watches (kid sitcoms) or in movies, or anywhere. And not as a passing storyline where they say, “Oh, gosh, what a terrible diagnosis,” and then continue on just like normal after a few token accommodations. And not as a sad, inspirational study of suffering. The reality. Of a whole life even with damages.
So the thing that I liked was that this movie shared an attitude of embracing disabilities. Celebrating disabilities. And, yes, it was also about overcoming challenges and striving towards normal (which is not my belief at all. I want to celebrate limitations). And there were plenty of cliches to go around.
Still. Good messages too. The supporting roles learned that hiding from the world was unnecessary, that their attempts to protect their family and friends from the truth of their limitations only hurt more than getting out there on their own terms.
There was also a big window into the stories we are creating with the war. The disability community is growing every day as veterans return forever-changed. I hope they find sites like mine. I hope we can create a chance to grow and discover. I know, trust me, I know the depression and sadness. But what a transformative idea. To be made greater. Rather than smaller.
We all need help sometimes. And that’s fine.
Now I have a new dream. I want to visit Winter. :)
I forgot the last day of September. I woke up on October first thinking, how did I manage that?
I know how. Friday was wild-busy. I was at school until 5:30pm. The shin splints fussed all day long, making me snippy. I was tired and wired all at the same time. I got myself sitting down with ice on my legs and forgot about a lot of things.
Saturday was my crash with an all-day headache. I didn’t worry about the breathing thing because that headache didn’t go away after a few hours. No, that headache settled in for a long stay. Today was still a recovery day. I have got to figure out how to pace myself through the week. Got to.
The shin splints have thankfully faded. They lurk- I can feel them slightly, especially if I go to a store, but they’re mostly quiet again. Nothing like adding more pain to make you grateful for the old pain levels
Anyway, I went back to my long counting. Day 1 was the day I was born. I have never known life without CMT. I wasn’t diagnosed, but I took longer than my peers to sit up, crawl, and walk. So, over 14,000 days of this story. Being different.
Quite an adventure
I did make witches this week! I took them to our local store, Make Local Habit.
I’ve also posted a custom witch on our etsy shop. I will only be making one or two more for the season.
And I finished my zombie. I love her. Pictures tomorrow. She’s all ragged and imperfect. Like me
I am super-excited to be working with Melissa at My Life with CMT. We’re inviting readers to throw questions our way and we’ll answer as best we can . Ask me here and I’ll share them with her, or go here with your questions and we’ll post the answers on both of our blogs. Feel free to ask about CMT and/or living with a disability. I’ll get some that you send answered on the podcast, too!
Today was not about me. I can’t give details for confidentiality. I can say that I used my first aide training. Twice. Everyone will recover, but today opened a window that I often keep closed.
I have the window slightly open, given my tendency to fall, or develop new health concerns overnight. But really, seeing the big stuff, I noticed the chasm between everyday life and our fragile selves. We cannot go through life like cracked-eggs, concerned about every possible misstep. At the same time, each day is a gift. We like to think our footing on this side of the chasm is secure. That it will take something big to shove us from safe and whole to broken and hurting. But truth is that the chasm is an illusion. All we need is one appointment, one symptom, one fall . . .
And everything changes. So my take-away today is vast appreciation for the health that I have today. And wishes for everyone to be safe and whole. Or healing.
Good times from the Crash-Zone . I had a blast at our family gathering this weekend. Today I feel like the landscape after a storm. Quiet and still and needing lots of repairs
I had this idea last week. I thought about all of the things that surprised me along this journey. I wanted a Hidden Manual: Stuff No One Told Me. About disability and CMT. Stuff like brain-chemistry and fatigue. Managing finances. Grieving. Holding relationships together.
And, on the sunshine-side, empathy and creativity. Strength and appreciation.
So I share. And this episode comes from a real place, where I’m coping with the fallout from my fun weekend. If you wonder what it’s like for those of us with CMT on our crash days, this is the episode. I’ve heard these times called the crash or the payback, aftermath or fall-out. They are the days after activities. What do they feel like?
Wow, that was not the day that I expected. First of all, my hand is in better shape today, hurrah. Not great, but not so demanding. I give it a week to get back on track.
No, today just took on a crazy life of its own. I helped another class with art this morning. Didn’t seem like a big deal at the time. Then took Ian to the park to play with his friends. Then to his gymnastics where he was super-sensitive so I had to keep going downstairs to console him (parents watch the floor from a loft-area). Then home for quick lunch, then to pick up Anika and grab stuff from class for tomorrow. I am trying not to get in scramble-mode where I don’t know what we’re doing until I walk through the door. I want to be prepared
Then to Anika’s gymnastics, later than I hoped, then hitting massive traffic as another school let out along the way. Then I get there and the parking is full. The accessible spot (disabled spot) is blocked because it’s in a corner. And talking to them about that hits a nerve, where I back-pedal saying it’s not a big deal, really. Even though today it was a kinda-big deal. So I drop Anika off in front of the doors, then circle around the building twice waiting for something to open up. I finally give up and park halfway around it (a big building). Get upstairs and Ian says, “I wet.” He’s figuring out the bathroom. So back to the car where I don’t have an extra outfit so we stay there for the next ten minutes.
Oh, and it’s hot by now. I don’t handle heat so well anymore. It unravels me.
Then I remember, Bunny Meeting. Today is bunny meeting.
That I didn’t schedule into my energy-allotment for the day. So home for quick dinner and back out to bunny meeting and home around 8pm. Phew!
And the strange thing was that it wasn’t so awful. I felt pretty good today. Alert and capable. To the point where I was trying to figure out, what did I do right? I took some extra anti-inflamatory medicine to help with my hand. Maybe that took the edge of the pain, which made me less tired. Pain is tiring. I don’t know. I had good energy-luck, maybe.
The real question is how will I feel tomorrow?
That I won’t know until I get there. :) I need to be disciplined about my tech curfew. For my hand and also so I get the downtime before tomorrow. Teaching day
I woke up thinking, I need to tone down the whole hand-story. It sounds so huge and dramatic. Sad and important.
Instead of toning it down, though, I want to clarify. It may sound sad and dramatic, but it’s my normal. See, it doesn’t phase me to talk about braces or injuries. From the outside, it may be a big deal, but, to me, this is normal.
When I was young, I used to think this CMT-life will get terrible. I might need a wheelchair in Disneyland. My hands might be affected. I might not be able to work. I might need help. And that will be terrible.
And then those things happen and they aren’t fun, but aren’t that terrible either.
I say that we learn. We learn that we are stronger than we ever knew. And those terrible things weave into the tapestry of one day into another until they are normal for us.
So no pity-party here. I’m sharing all of these little moments precisely because I feel that they get lost in my constant “I’m fine” reassurances. My goal is to show that CMT imapcts a lot more than feet and hand strength. CMT changes everything.
Calling a neurologist for a new brace sound like cause for alarm, but it’s my everyday life.
My normal.
I didn’t get to choose this path. But I choose how I walk (or limp or roll) along it. :)
PS- I slept with the brace on and my hand feels a little better this morning. I am optimistic it’s a short-term wake up call. Back away from the computer
Hello! I am a writer, teacher, artist, photographer, crafter, and mama. I started this blog to celebrate everyday life. I have two children that are magic. I want to capture these amazing years for them.
I also have a degenerative neuromuscular disorder called Charcot Marie Tooth that causes nerve damage, leading to muscle atrophy, joint problems, and more.
I want to rewrite what it means to live with chronic health challenges. I started the Disability Community Podcast to share ideas about living well with limitations.
I love technology. The Right Click podcast finds the latest and greatest- especially for accessibility.
I am also co-creator of Forest Fairy Crafts. We love whimsical crafting with children.
I teach kindergarten/first grade at the Nevada City School of the Arts (part-time), take many photos, and write indie-stories. Life is an adventure. I adore java-chip frappuccinos, beaches with easy access, and werewolf stories.
