Tuesday, November 10, 2015

Session With the Jedi Master

Ready, Set, Jedi

Let's do this!

Somehow in the middle of the business of the kids school starting, my return to the stage, an extended family emergency and general life stuff, I managed to squeeze in another neuroplasticity session. This one was special because, Tamar who had started this work with my friend Gregg, was leading this one. If you missed my first post about this work you can find it here: Starting the Process.

I was really looking forward to another session and especially working with Tamar. Lynn was there as well since it was a learning opportunity for all of us. As usual Mike, my husband, came to observe. We opted for some music and got right to it.

I really had no idea what to expect, but here I was, new to all of this and I was meeting with the woman who made all kinds of magic happen in that movie. A lowly little Padawan in the presence of Master Yoda herself. She asked me to sit in a chair and move my hands and wrists to start. I was fine with that but keeping my feet on the floor was causing me major frustration. Hello, spasticity? F-off. How is a girl supposed to concentrate on her body when her body keeps interrupting like a toddler when you're on the phone?!?

We moved on to the the image of water. Floating on water, water around your brain inside your skull, water through your skull and floating your head forward. The image of my body being mostly water was lovely since my muscle tension usually gives me images of planks of wood, held together by rusting old hardware! In reality it is all fluid and therefore changeable. Movement in any direction is (at least theoretically) possible. Then she reminded me of the bony skull around the fluid and told me to bring it up in anticipation of a crown being ceremoniously placed there (does she have my number, or what?!).

Someone (or everyone) observed that I often turn my head to left and purse my lips in concentration. The things I don't notice could fill a book. Speaking of noticing, to keep up the idea of fluidity she asked me to alternate noticing the carpet, furniture and ceiling. Each "noticer" was a different character with distinct characteristics which informed their movement. All this was done while sitting and without breaks in movement. It sounds ridiculous, but it was riot. I was having so much fun and I think watching was entertaining everyone else.

Next I was up on my feet. My stupid, uncooperative feet. I stood holding onto a piece of furniture and we discussed being rooted. We attempted to get weight on both feet by shifting weight from one to the other by "ironing with the pelvis". It worked and suddenly I had weight on my underused left foot. She also reminded me to think rooted and upward. We experimented with different hand placement on the furniture for a bit until BAM I was a freaking oak tree again! Standing up! Grounded with weight on both feet!

I actually had anxiety that I would never be able to lift my left foot. I know my disabled readers are familiar with this horrible anxiety when a drastic physical change happens. After years of scar tissue build up on my hamstrings preventing me from straightening my left knee and then surgery to remove the scar tissue that I was TERRIFIED to bend my knee. I remember thinking "What if I could NEVER straighten it again?". It was a huge irrational fear. She asked me to walk holding onto the furniture, but I kept shaking my head no. I flexed my toes a little, but I didn't dare lift my left foot. Eventually, my overachieving nature overpowered the fear and I took a few steps. I paused between them to make sure I could still feel weight on my left foot.

Crooked Mirror Crooked Mirror

Next we addressed my mis-alignment. She compared me to an Indian dancer because I was standing (still grounded) in an "S" shape. She said "We need to bring your ribs back over your pelvis." I remember thinking "Yes, bring them back." because that's where they came from. Go home, ribs. Go home. Go home. Go Home! This was a lot trickier than I anticipated, but one should not underestimate the pull of a long standing habit.

As our time was drawing to a close Tamar wanted me to try the "shaking." I was thrilled because I'd seen Gregg do this in the movie and I was so excited to give it a go. The idea is to repeat a simple movement until your nervous system fatigues. In the movie this resulted in Gregg visibly shaking. I laid down on a towel on the floor and did a quick "check in" with my body. The big news was that I totally found the back of my right hip! Score! Then I was told to open and close my legs for a few minutes, but I didn't shake. I felt "hot spots." A burning in my left calf, low and mid back. I was so bummed.

Tamar talked about allowing all the labels to be lifted (bad hip, good knee, etc) which resonated even if it isn't as easy as it sounds. She reminded me to think of it as a journey which is a challenge for my goal oriented mind. She told me I just had to "study" until my body remembers. The thing that really stuck with me was that "All the damage from the CP healed years ago and now it's all just patterns." It's a lot less overwhelming to overcome a stubborn, set in its ways nervous system than a broken body.

Thursday, November 5, 2015

Dreams 1, Limitations 0

A scene from "Crimes of the Heart" Sept 2015

Barnette and Babe

Closed Captions are accurate and transcript is available if you click "more" under the video on YouTube.

Sunday, November 1, 2015

Happy Halloween!

Hey there, blog fans!!

I'll be doing some vlogs to catch you up on all the exciting stuff in my life, but for tonight here's my friends and I dressed as villains doing "Thriller"! Happy Halloween!

Monday, August 3, 2015

Read Me on Another Blog

You may recall me mentioning a new "physical experiment" I've started, well I was asked to write a post on their blog about what starting the process was like for me. Obviously, it's a very individual and personal process so it's different for everyone who is brave enough to start re-wiring their nervous system.

You can find my words on the subject here: Begining the Process.

Thursday, July 23, 2015

Open Mic Night

In the spirit of being me again, I have been venturing out a little at a time. A sewing class on a weekend day during naptime, an audition after dinner, a film festival date with Mike and so on. I am trying to wake the hibernating (or at least drowsy) artist in me and grow again. I'm putting a little focus on the part of me that isn't someone's mom. Part of that is the 'physical experiment" I've undertaken which has given me a lot to process even so early. I wrote a poem about it and read it in front a room full of strangers and shared it with all of you. Change is good.

Friday, July 17, 2015

Oh, Gravity...

That day last summer when gravity won.

Gravity Wins

Closed Captions are accurate and transcript is available if you click "more" under the video on YouTube.

Monday, June 29, 2015

Darn Ankle

When I was in college I took stage combat. It was amazing. My teacher pulled me aside early on to tell me he was worried about me taking the class, but he was wrong to worry. I loved doing fights because most often my opponents/scene partners got boo-ed. I was always grateful to be the aggressor in class because I knew I'd never get cast that way. I credit my success in the class to not being afraid or inexperienced at falling.

At some point near the end of the semester I went down wrong and sprained my ankle. No biggie or it wouldn't have been if I hadn't ignored it and walked on it over miles of college campus the next day. The following night they shook their hands at me in the ER and sent me home with an air splint and told me to stay off it. I must have listened because it healed.

Every so often if I really over do it or it's particularly rainy it goes out. Like no warning, no pain and then mid-step my ankle can no longer hold me. No big deal. Every now and then it quits on me once or twice in 24hrs and then it doesn't happen again for months or years.

I took little Miss shopping and walked the great big store in horrible shoes (flip flops). Oops. I know better. Afterwards, I sat down for lunch and had some swelling. I kept on trucking and by dinner time my ankle had gone out twice. No biggie, it happens. Then it happened a 3rd and 4th time. I chalked it up to a rough day. The next day after lunch it happened again. I was annoyed, but not to worried. Then at dinner time it happened again two more separate times. That's when I got worried.

That night I had nightmares. I dreamed I had to re-attach my foot to my leg with duct tape. I finally called for some medical advice and was told to stay off it. That the ligaments were stretched out and I needed to ice and elevate.

Puppy Ankle
My dog taking care of my ankle.

Friday, June 19, 2015

Lost My Footing: Cane You Help Me?

Welcome to my first ever video post! Leave me feedback if you'd like more of these. Enjoy!

A picture of my outfit, as promised.

Wednesday, June 17, 2015


So, we were reading an article that was a list of 25 things kids in the 80's did in school that kids now would never do. There are so many? Who knew how dangerous our childhoods were, right? Anyway, dodgeball made the list. Here's my question did any of you able-bodied kiddos ever just pretend you got hit and sit down? I totally did, EVERY TIME. If they made me play and my team wasn't throwing I'd count to about 30 in my head and then go sit on the bleachers claiming I'd been hit. Ha!

What was that game supposed to be teaching? Because it taught me that there was a time and place for cheating (cheating to lose no less).

Tuesday, June 16, 2015

Born Old

Hi Mom New Me
Pictures taken the day after I was born.

I was born old. Not old in spirit by any means. I, my friends am a permanent resident of Neverland. I mean physically old.

Ironically my body is so much older than my true age because I was early. I had big things to do and I wasn't going to waste any more time than necessary gestating. Unfortunately, there was a supply and demand issue between my brain and oxygen due to being ahead of schedule. Survival's always been my thing so no biggie, but I drew the walk funny card.

It's kind of like Sleeping Beauty most of what I got was a boat load of amazing, but you know there's one baby curserer at every party.

I didn't realize how "old" I've always been until freshman year of collage when we had to observe the way children and old people moved. When I watched an elderly woman come out the front door of a building, pause at the top of the front steps, find the railing, lean into the railing and cautiously lower her foot to the step. I saw myself. I move like an elderly person.

At the time I filed that under "interesting" and didn't think to much about. Then I got hit crossing the street, got pregnant and had a baby and generally started getting older.

I live in a body with faulty wiring. My brain relentlessly misinforming my muscles so that they ratchet down as tight as my frame will allow. I'm just along for the bumpy ride.

What will another decade or two mean to my joints, muscles, tendons used and abused by my wonky gait all this time...

My physical therapist in elementary school informed me in a mater-of-fact way that I would blow out my knees by the time I was a teenager. She was wrong-o I still have two functional knees. My horrible orthopedic surgeon when Miss Roo was tiny assured me with God like authority that my left hip would have to be replaced within the year, still got that too. Although, he was a quack in general and wasn't to be trusted (not that I knew that back then). There have been so many who thought they could "fix me", pray away the cerebral palsy, bulk me up, change me or ignore my limitations. Well meaning people can do be so misguided, it's a shame. We all know what they say about opinions, ha!

I remain cautiously optimistic, in spite of my fears, about aging. I remain me. I just keep moving forward. I keep adapting and lord knows, I keep aging...

Tuesday, June 2, 2015

I Said No Thank You

Holding Hands
Picture from 2011

So many, many millions of times I wished as I hobbled or rolled towards a door with my balance wavering and hands full that someone, anyone would notice and hold the gosh darn door. It happened a lot more after I had kids. I started trying to move objects with a palpable frustration as focused as the force. Now and then I got lucky and someone would help me out. To be clear, doesn't everyone (able bodied included) wish all doors were automatic and equipped with sensors from time to time?

I enjoy the occasional polite, observant stranger who doesn't slam the door in my face or picks up the pen I dropped with a smile. I do the same whenever I can. In fact it's quite entertaining to watch folks take in the disabled lady holding the door for them. What I do not like are the pushy, oblivious and condescending. "Do not like" is putting it far to mildly, but in the interest of not scaring new readers away I'll leave it at that for a moment.

Pushy? You may be asking yourself what on earth I could possibly mean. When little Roo was a few months old I was walking to the car with her in a baby carrier on my chest. I had the baby, my purse and crutches. I had a moment, you know the have-to-stop-right-this-second-and-readjust-moment. I slowed down, put one arm around the baby, knelt down on the sidewalk and pulled my purse back up on my shoulder with the other hand. I had no awareness of anyone else until a man approached and said something about helping. When I turned my face to him and began to get back to standing he simply took the baby from me and carried her to my waiting car. Um, WHAT?!? WHO DOES THAT?

I've had people snatch things from my hands (not good for the balance), lay hands on me to pray without my consent and simply walk up behind me in my wheelchair and push me somewhere! Would you just throw your friend over your shoulder fireman style and carry them somewhere? Sigh. The difference between polite and pushy is extremely simple: Use your words.

If you speak to me respectfully as an adult without condescension or pity I will respond politely. "Can I give you a hand with that?" works great. Next step, wait for me to respond and respect my wishes. No thank you means no thank you. I'm not a child who can't fend for myself lost out in the world waiting for you to save me. I am an adult with some physical limitations. I did not come to the grocery store to inspire you. I didn't ask if I was "doing great" or a "real trooper" I just need milk.

This morning was rainy which doesn't bode well for my joints, but I was doing fine. I was ahead of the curve to be honest. I had my hair and make up done, a cute dress on, my cane had a brand new tip on it, Roo was looking adorable and we were all smiles. I decided to "run in" to Target on our way to a play date. I only brought one canvas bag. We lingered in the store longer than I intended, but I used the electric cart. We only needed the one bag and now I was caffeinated! The rain had even stopped for a moment so we were good to go. I decided to park the electric cart inside rather then bring it to the car so that if it did start raining again the next person wouldn't get a wet butt. Nice, aren't I.

I walked out the exit without the hassle of umbrellas (yeah plural, because my sidekick has to have her own) with my purse on my shoulder, my one light bag in one hand and cane in the other and Roo obediently keeping pace with her hand on my wrist. If you only knew how many times I'd been in this same parking lot with 15 heavy bags in the rain wishing teleportation was real. Not today, today I was on a roll. I mean you can go ahead and applaud me for going into Target with a five-year-old no less and coming out with uno bag!

All the sudden there was a woman behind me. I didn't hear her at all. She was completely ninja which was impressive for a heavyset middle aged lady wearing bright colors. When she invaded my personal space she asked "are you ok?" I was startled by her presence so I paused with my key in the door and stared a moment. I recovered from my surprise and said "Oh yeah, I'm fine." She stood there way to close to me unmoving I don't know if she even blinked. She may have been a Dr. Who villain now that I think about it. Anyway, I repeated "I'm fine" this time adding "we only have one bag today" with a smile as I opened the door and threw it in.

She proceeded to grab the door handle and "hold" the car door open. Seriously? It's okay those stay open by themselves, lady. She asked something along the lines of what should she do to help. Again (a little less politely this time) I assured her I was fine and then I attempted to hurry Roo into her seat so this lady would buzz off.

"Buckle up. They're waiting for us, sweetie" when the lady still stupidly holding my car door heard me say this she said in a completely relieved way "Oh, are you with someone?" Wow. Really?!? I told her we were just in a hurry to get somewhere. Then she laughed and said "Oh. I thought you were with somebody. I was gonna say why aren't they out here helping you!"

OH. MY. GOD. What exactly did this delusional woman think was happening here? I basically had to slam the door in her face to get her to go away. Can't relate? For two seconds just imagine it's a nice summer day and you're all ready to do some work on the lawn. As you set out to pushing the mower across the yard some stranger walks past and stops. They stare at you for a bit and then without a word grab the mower handle and when you resist them they kneel down and begin pulling weeds. As you stand there in shock they ask you if you're home alone. They grin all the time as you tell them you've got this under control. When they finally decide to bug off without warning throw themselves in front of the lawn mower and passionately pray for your messy lawn. A normal, non threatening stranger, but still all up in your personal space ignoring basically everything you say. That's messed up, right?!?

The most messed up part is that I'm sure she went home feeling pleased with herself. I'm sure she told her friends she went out of her way to help a poor gimp in the rainy Target parking lot that morning. Unbelievable.

Friday, May 29, 2015


Ariel Tumblr

The other day I was searching Tumblr and I came across this post. I like it all for the obvious CP and Disney reasons, but I disagree with the creator a little. I would absolutely LOVE to be rid of my lower half, but not just for better more reliable legs. No Ma'am, I want a mermaid tail! Ever since I was a little girl I've wanted to be a mermaid. I mean who doesn't want to be a mermaid?

I grew up near the water. When I was a little older than Miss Roo is now my mom took me to see a mermaid show. You go down into underground room and look at a big glass wall which allows you to see Mermaids performing in the springs. It's amazing. Afterwards you can go get a picture with one of the mermaids from the show sitting on a rock. I'll never forget how special it was to meet a real mermaid. She kissed my cheek and I refused to wash the lipstick off. I wish I still had that picture.

Being a mermaid is magical, but for me being in the water always made me feel so free. I could swim just as fast as I pleased, run even! I could do handstands and flips. Spasticity and balance became non-issues in the water. I had reoccurring dreams as a little girl about being underwater, sometimes with a mermaid tail. I used to love that ride at Epcot that had the future homes. There was a space colony, a dessert and my favorite was the underwater colony. People just living in this little bubble dome under the sea. Incredible.

Swimming is what I imagine flying would feel like. I think Ariel got the raw end of the deal, but then again the seaweed is always greener, right? Maybe if swimming was all I'll ever known clunking around on land would have a lot of appeal. I still think a mermaid tail is the way to go.

Ariels Grotto

Thursday, May 28, 2015

Happy Summer Everybody!

Close Up Beach Wheelchair

These pictures throwbacks to 2010 when my little Roo was just a year old. Let's just pause a moment to enjoy those wheelchair tan lines! From the hem of your shorts to the middle of your knee cap. Who needs to tan their whole leg evenly? I know I'm not the only one with who has a darker tan on the top upper leg than anywhere else from sitting in a wheelchair. Hilarious stuff.

Wednesday, May 27, 2015

In Your Dreams!

Lego Parking Lot

Here is a late 90's throwback for you. This is me, thoroughly amused at the tiny parking spaces and meters at the Lego store. Which loosely ties in with my post because you'd put change in the meter and leave your chair behind in this fantasy, right?

Over the the long weekend we were having a discussion about dreams. Mike was saying he'd never dreamt about a certain situation. I said it's a funny thing how dreams pull from your conscious mind, but at the same time I've never been disabled in a dream. I've had dreams where I can't out run something scary or physically get to something I need, but I never dream my funny gait or mobility devices. Not Once. What about you?

I never thought it was weird either. Anyone can be limited in any way in a dream for no reason at all. We're just not our actual physical selves when we dream. I've had dreams were I'm older, younger or even a different gender than I am in real life. What do I know anyway? I'm just speculating based on being able to fly or sink into a tiny puddle the size of one of your feet. I would love to hear if anyone has a theory or does dream their disability.

Oh No! A Blow Out!

Can Tip
When I was a little girl we always had a few can tips in the closet for emergencies. Amazon Prime here I come...

Thursday, May 21, 2015

Not It!

Hang in there with this one it isn't what you think. I know someone who had surgery the other day. She was craving a very specific food hardcore. I am deeply empathetic to this plight so of course I delivered said food item. (Nope, not patting myself on the back here). It's so unbelievably nice to NOT be the one 3 days post op with a toddler running around, a belly that hasn't been properly filled in days and no way to get the food you really want in that life or death way you want food when things that used to be inside our body have been removed. I know better than to say "those days are behind me", but it's nice to be on a break from them!

Wednesday, May 20, 2015

Lights Out

I totally just tripped walking out of the kitchen and as I fell switched off the light by accident. Hilarious, couldn't do that again if I tried.

Just a Thought...

If you insist on perusing unstable girls, I recommend the physically unstable.

Uneven Gait 1 - Shoes 0

Torn Shoe
Don't you hate it when your uneven gate ruins your favorite shoes! Lucky for me, Mike super glued the fabric and colored the exposed part with dark blue Sharpie so I'll get to wear them a bit longer!