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.

Oh, Gravity...

That day last summer when gravity won.

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

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.

My dog taking care of my ankle.

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.

Dodgeball

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).

Born Old

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...

I Said No Thank You

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.

Mermaids

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.

Happy Summer Everybody!

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.

In Your Dreams!

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.