Lenkaland

“I think we underestimated your neuropathy.”

My surgeon said this a week into my recovery last May. After the worst week ever. His words could be the story of my life.

It’s easy to underestimate my neuropathy. You can’t see it. You can’t measure it very well. Even I forget the many impacts of CMT. Lately, my CMT gets underestimated (by me most of all) when I get sick.

I don’t remember issues with getting sick in my twenties. I caught a cold. I got better.

In my late twenties, I developed bad allergies. I was diagnosed with asthma and given inhalers. In increments of a few years, I got my Chronic Bronchitis diagnosis and I started getting flu shots.

These days, I just can’t get better without serious interventions (antibiotics, days of downtime). I had hoped that the issues around my surgery (damaged spleen) were resolved, so my immune system would be back on track. I guess not. This cold sank in deep. Yesterday the doctor loaded me back up with inhalers and antibiotics. I feel a little better today. But I could rest a week. Doing nothing. Which says a lot for me, because ‘nothing’ is my most challenging activity.

I don’t have any research to connect CMT and challenges with illness, but it makes sense. A system that’s working its hardest just to get through the day would have a tough time allocating resources to fight a cold or flu virus.

And stress aggravates illness. I know that. I don’t need scientific proof (which is hard to quantify effects of stress on ourselves). I know that in my own reactions. And I am carrying long term, heavy stress. My husband is on month 11 of unemployment. The one possible ray-of-sunshine job opportunity disappeared. My boy is a busy three and a half year old with lots and lots of energy. My girl is navigating third grade with reading challenges. My class at school is fun-busy-learning.

I’m not getting a lot of downtime at all. And when I carve out the downtime, I feel guilty or overwhelmed.

So what do I do?

• First, stop beating myself up over it all. I get to feeling like I should be able to manage everything, like getting sick or tripping is part of my own bad decision-making, but I need to take a kinder approach. I do my very best. And I cannot always outsmart or manage the CMT. It is a rollar coaster and I cannot predict every turn.
• Do the ordinary things like take vitamins, get lots of sleep, eat well. Practice healthy habits.
• See the doctor earlier. I tell myself this every time, and every time I feel like I’m exaggerating my symptoms, so I wait for another week to pass and call when it gets really bad. Don’t go there.
• Downtime. Don’t feel guilty for downtime. (this is the toughest of all for me)
• Stay warm (as much as possible)
• Ask for help. This can be tricky because I don’t always know what I need for help. But I did call my mom on Sunday and asked her to take the kids for awhile. And my husband brought me chicken soup. Little help can make a big difference. And I know that I get proud sometimes, or I feel embarrassed, like I should be able to handle it all, but that does more damage in the long run. Help is a good thing.
• Say no. Or trim back on scheduling. Or, however to say it, slow down life. I tend to schedule my days through the winter just like summertime. When the reality is that winter demands a lot from me. And what is possible in summer- chores, social activities, and creative projects- may be too much for a winter day.
• Sleep.  Get enough.  More than enough. Sleep is wonderful.

A good place to start. The medicine is doing its magic and I feel the fog clearing. My main goal is to be mindful. Thoughtful. Respectful. I will not underestimate my journey. I also will not stop traveling on, experiencing and digging into the juicy stuff of life. Museums, parks, public spaces where germs thrive. I’ll bring antibacterial gel. I could put that on the list with washing hands. That feels like common sense.

I suppose as long as I’m teaching, and I have kids, I will be exposed to lots of germs. I’ll keep being careful. And hopeful.

And I won’t underestimate the big work that it takes. Just to be me.

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The other day as we were tucking into bed, my girl said,

“You know, Mom, I understand kids with challenges. I understand how they are. I get confused sometimes. And I know I shouldn’t be confused. I know it’s not that hard. But I can’t help it.”

And my heart cracked. She has Auditory Processing Disorder and she works very hard decoding words. Reading is an arduous journey. My mind spun for an appropriate answer as she looked my way and smiled.

“But that’s okay,” she said. “I’m okay with that. We’re all different. We all think different. And other kids have a hard time with other stuff. And we all have our gifts, too. Everyone has gifts. We just enjoy what we are.”

My heart cracked again for a very different reason. I am so proud of her. So excited to see the world through her eyes. Where opportunity means more than limitations. Sweep away the negativity. Sweep away the shame and disappointment. Celebrate today. Celebrate now.

Here is a classic gift from Anika. She made this for my classroom. Later that night, she was reading and saw the word ‘new’. We sounded it out together. ‘Wait,’ she said. ‘Is that really how you spell it? Because then I did it wrong.”

Not wrong. Just right. Happy Now Year

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So happy to be home. I love traveling, love the adventures, but I also love returning home. I know this place. I don’t bump into corners (as often). I get my routines and quiet(er) times. I am safe here.

And, at the same time, I just want to get away. I’m reminded of all my challenges here. Piles to sort, laundry to fold, crafty supplies to organize. It’s so easy to feel inadequate. Especially because the fun takes energy and I come home needing to recharge.

We used to get help around the house, when my husband was employed. We are going on month ten of unemployment. And he does a lot around here with the big stuff- vacuuming and scrubbing.

I just feel like I should be able to help more, get more done, faster.

The frustrations are not unique to me, or even unique to my situation. Yes, I have a few aggravating factors. And they could overshadow these days together. I could go into a frenzy of cleaning and snipping at my family to pick up more, now, faster.

Or I could breathe deep. Give small doses of time and energy. Take breaks. My knee is still sensitive. It will be fine. I’m careful anyway.

Relax. Enjoy vacation instead of using vacation for housework. Trust the stuff in corners will find homes eventually. Laugh. Give myself room to be me, not an idealized version of me.

That would be a huge gift. To let less be enough.

I won’t get everything done and that has to be okay. Because it won’t get done whether I’m mad or gentle. I don’t get to choose how much energy I will have in the morning, or how I will feel tomorrow. I do get to choose how I treat myself along the way. Tomorrow, I will choose kindness. Sounds sweet

After all, happy moms make for happy families.

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My friends can guess this story already by looking at the stairway. The picture says a thousand words

Now, the moment began, not at the top to these stairs, but much earlier in the day. Actually, last night. Ian has an ear infection with a fever so he didn’t sleep well and I gave him medicine at 1:30am. Then up at 6:30am to teach. Rushing home as soon as I could to give him comforting. And I was the empty shell on the shore, tired beyond tired.

This is Nutcracker weekend, so I got Anika dinner and dressed in her mouse costume. We live across the street and parking is rough with the show so I walked the half-block, then across the parking lot. And then. Then the stairs. Oh, and Ian couldn’t stand me leaving, so he tagged along. Not feeling well but determined not to be left behind. The dressing rooms were down these stairs, down the hall, down another few stairs . . .

I just couldn’t muster the energy. We went into the theater lobby with the bustle of pre-show organizing. We checked in with her dance teacher. “They go around and down to the dressing rooms,” she said, already turning her attention.

I took a quick breath. Be brave. Be strong. Because in this moment, it’s easiest to say thank you. And walk the stairs. And deal with the fallout. Instead of calling attention to myself and my story. She barely knows me. “Actually,” I said. “Is there anyone that could walk her down? A group of mice she can join?”

She glanced at me, that glance that feels like it measures me against my words. Wonders how I could be so lazy (my interpretation, I guess).

I stammered, because I do that when I need clear words the most. “I just, it’s hard for me-”

“We don’t have any runners and-”. She still had that quizzical gaze, which I felt as “really?”

“Nevermind,” I said. “I bet one of her friends will be here soon.”

And that was a solution. Anika walked down with a friend. Luckily she’s very independent. And she knows her mom.

Ian and I trudged on home. I tried to rest. I walked down the stairs to pick Anika up, after all.

But the hard place was the moment of speaking needs vs. staying quiet. There is no winning answer. I speak up and I feel guilty. Or I stay quiet and I ache. Especially when challenges are not obvious, speaking up makes waves in what seems to be smooth water. I like to be smooth water. But each chance that I have to make waves is a chance to educate, and to take care of myself. And that’s important modeling for my kids, too. To see that we can be true to ourselves and help each other out along the way.

We all have our stairways. But maybe we don’t have to climb ever single stair alone. Maybe we can skip a few .

PS My feet and legs are still mad mad mad at me … Even with my brave intentions . Oh well, I tried

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I am usually a holiday girl. I bought a tree with my allowance when I was a kid to keep in my room. Five years ago, I hung two strings of lights along the gutters all by myself. Climbing that ladder twenty times was no small feat. I even love wrapping presents. I used to wrap them for my entire family. I decorated and baked and crafted and bought Christmas music.

This year is different. This year, I dug in my heels even against Thanksgiving. This year, the holidays don’t sound sparkly and fun. They sound like work.

It’s the same thing that happened to traveling earlier. I’m sure it’s not just me. I mean, the rest of the year is challenging enough. We’re managing our families, finances, symptoms, lives. And now, just when that was overwhelming enough, have more! Gifts, decorations, events. Evening activities. Traveling. Lots and lots of expectations.

And I see, all over again, how it’s easier to say ‘yes’ and deal the with consequences, instead of saying ‘no’ and explaining why. Especially with invisible challenges, it’s so hard to set healthy limits. Especially when the limits change day to day.

So my goal this week is to get another podcast recorded. I miss our community. I’m trying to revive my frozen holiday spirit. I love this time of year. This apathy isn’t me at all.

I am searching for solutions. I have a few ideas. I am closing orders of custom fairies on December 3. Hard to say no, but I want my family time, too. I will also not craft a thousand gifts. This one is hard for me. But I was good- I bought a few things on Etsy that I could have made myself. Little steps . And … I don’t know yet. I’m trying to think of more.

I’ll let you know as I discover them. I need to take care of myself, too. Oh, I’m trying to buy local and crafty (etsy) so I won’t be walking through big stores.

Small choices that will hopefully add up to magic

I miss the magic

After all, how could I possibly disappoint her? She’s all excited for her Nutcracker show this week. Photos of that adventure tomorrow.

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So this week, inspiration struck.  Lightning from the blue sky.  And I say, I have no time (true).  And I say I have a thousand projects already (true).  And I say later, please, later . . . Except, we don’t know about later.  It could be never.  And this book needs writing.  If I were to fall off the earth tomorrow, not writing this book would be my big creative regret.

I rushed into the idea, and then remembered my earlier hurdles when writing fiction.  I have a Masters degree in Creative Writing, a Bachelor’s in literature.  I have shared my stories in many workshops and heard common questions and themes in response.  Back then, disability was a far-away word, so I didn’t connect their questions to my experiences.

I don’t expect everyone to be literature junkies who reads this.  So, in short, there is a Master Narrative in our stories- a big pattern that most books and movies follow.  A hero (or heroine) embarks on a journey and along the way they are tested.  They are usually isolated from help.  Then, through wits and strength and against-all-odds, they defeat the bad guy (or girl) and win the day.

I love this story.  It’s Star Wars and Indiana Jones and Lord of the Rings.

Now.  My challenges.

Most traditional characters choose their path.  They peek behind the curtain, wish for change, want to join the rebellion.  My characters . . . don’t.  Often, something happens to them completely against their wishes and they have to deal with the consequences.  This bothered my critique friends.  What does your character want? they would ask.  How does this story help them get what they want?

In my stories, characters didn’t get what they wanted.  They got attacked.  Ruined.  Lost.  And they had to figure out what to do next.  Sound familiar?  How many of us chose this disability path?  Not many, I’m guessing.

I also couldn’t make an anchor-character.  This is the farm-boy, or Dorothy, or “regular” person who could interpret all of the crazy happenings around them.  I heard the quote, I write about normal people in extraordinary situations.

I did the opposite.  My main characters were often the ones struggling with a difference, with trying to be understood or accepted. I wrote about extraordinary people trying to fit into ordinary situations (The Goblin Queen).

I also couldn’t pitch my characters into various tests that would prove their worth.  My characters would lose.  They would be defeated.  I could never write the “believe in yourself” storyline.

Because I have believed.  And failed.  Even before my diagnosis, as a child, I banged up against the “believe you will catch the ball.” “Believe you can hike with us.”  ”Believe you can walk across the creek by balancing on a fallen log.”

I fell a lot.

My characters have a lot of weaknesses.  Which doesn’t match expectations.

I remembered all of these obstacles and I almost sighed and gave up.  I’m not sure if I can carry a disability perspective that appeals to everyone.

I know I can’t write a traditional story.  It’s not me.  I’m the outsider.

I want to celebrate that.  I have to believe that there is room for all of our narratives.  Traditional or non-traditional.

So I’m going to write the story.  And we’ll see how it plays out long-term.

I try not to argue with inspiration

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If I am a house, I have a hundred rooms.  Each room is wired for lovely lighting.  And with the light, the room works.  Everything inside the room is useful and bright.  Ready for action.

My house is tidy.  My house is strong.

Except.  My wiring is muddled.  The wires that bring light are fragile.  They get mixed signals so they weaken.  Rooms get dim.  Everything in that room gets covered in cobwebs.  But the room is still there, and, with effort, can be useful.

Those rooms are not the problem.  Not really.

The problem rooms have no light at all.  The wires are cold and quiet.  No light shines.  Blackness fills these rooms.  And cobwebs choke the corners.  Everything in those rooms crumbles.

I cannot use lanterns to reach these rooms.  The doors are locked and barred.  Dark seeps through the cracks, pulling at hallways.  These rooms are gone.

And I need them.

I hear a lot, “Oh, weakness?  You should exercise.”

But the problem isn’t the lights.  It’s the wires connecting the lights.  If communication gets cut-off, all the exercise in the world will not touch that light. I can work on this house every hour of the day and it won’t matter.

Because my house is haunted.  Doors slam shut.  Lights flicker on and off.   I think I know this house, but the house changes.  Every day.  Over many days.

Still.  I make the most of my time here.  Though it’s haunted, and broken, and tired, it’s my house.

And love shines even with damaged wiring

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Always something

I visited the neurologist yesterday craft a winter-plan.  Winters are crazy-challenging for me.  ”Why haven’t you moved to Palm Springs, yet?” the receptionist teased me.  I am old before I’m forty .

Anyway, given our finances and the fact that I like this area, we aren’t moving just yet.  We are so underwater on our house (owing more than it’s worth) that it will be a long while before we can leave.  We’re the generation that bought in the boom and inherited the bust.  Then lost our jobs.

But we’re holding on.  That’s enough for now.

And I’m paying a ton of money each month for insurance, so I figure I should use it.  He did the basic tests- reflexes (none) and grip strength and resistance measurements.  Then he paid attention to my knee.  ”Does this hurt?”

A little.

“Hmm.  Well, it shouldn’t really.  What about-” He pushed my leg gently while holding my knee and a tweak of pain yanked at my muscles.  ”Ow!” I said in surprise.

“Not good,” he said. “That shouldn’t hurt.  Sorry about that.”

“It’s okay,” I said because it wasn’t that big of a deal.  ”What does it mean?”

“I’m worried that you may be damaging the cartilage in your knee.  The muscles aren’t strong enough.  We need to work on exercises.”

He suggested a few basic strength-building exercises.  And we chose a new medicine to try for the arthritis.  And I walked away, again holding this story that I need to weave into my days.  Because it doesn’t seem like that big of a deal.  But it could be a huge deal.  Strange how my stories change.  And I get used to an idea.  And when new information surfaces, when something like this happens, my whole world rocks on its foundation for awhile.

Because this time, I was okay with dealing with mess in my ankles and feet.  I’m even wearing the braces more.  I accept the decline from my shins down.  Same with my wrists and hands.  They are are fragile and fussy and I know how to care for them (mostly).

But not above that.  Not knees and elbows.  Not shoulders and hips.  Though I should know better.  Really.  Still, not fun to think about.

I’m no different really than a week ago (or am I?).  Just awareness and caution.  That’s the tricky part about degenerative conditions, though, because it can change that quickly.  And it can be a really big deal.

Hopefully that’s the most I need to worry for awhile.  :)

Because exercise is a lovely idea.  But if the nerves are fraying, exercise won’t accomplish much.  I have a story for that.  Tomorrow.  :)

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Fall break meant no school or work for me this week.  Late nights, late sleepy mornings, and a big slowing down.  Even thinking about going on a trip was exhausting, so we stayed home (except for our day-trip to the pumpkin farm).  I needed the time.  Recharging.  The sun shone those golden autumn afternoons.  My energy returned.  My ideas returned.

Energy is worth more than gold.  Really.  I could have a million dollars in the bank (I wish!) and it would be useless if I couldn’t rustle up the energy to enjoy the day.  So I don’t take a single day for granted.  Or a creative project.  Especially since I fell into a creative hole in early October when the ideas turned dull.  No, this week, plans sparkled.

I sewed this skirt for Anika.  Sewing works well for me because the fine motor isn’t too demanding.  I’ve made enough skirts to create my own patterns.  This time around, I took photos to try and remember the process (because I always forget and start each one from scratch ).  I want to make a tutorial for Forest Fairy Crafts so I needed a photo of her wearing the skirt.  The skirt has a print with black branches and owls that have white eyes.

Ian insisted on being in the photo.  He said that he didn’t have a grumpy face.  So we showed him the image on the back of the camera and he brought out his charming “cheese face.”

So lucky to spend my time with them.  In that way, I have the gift of slowing down.  Especially now that we’re broke.  We spend a lot of time at home.  Playing games.  Hanging out.  Being together.  Nice.

Because . . . Have I mentioned that she is growing waaay too fast?  She’s a little lady!

Then we had to take the skirt for a spin, because the best skirts must twirl.  And twirl.

Lovely.

I wrote the tutorial for this skirt!  Click here. Enjoy!

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Episode 35 Show Notes

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

My Dolphin Tale Post

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