Gellie's Hallmark Moment

 Anyone who lives with a disability will tell you that as a culture we still have a long way to go to understanding that not all physical disabilities are obvious. I still limp and use walking aids. If it’s a short walk from the car into the store, and I know I can hold on to a shopping cart when I get inside, then I’ll just walk. And I’m pretty good at faking it. Most people don’t notice that my right ankle is paralyzed or that I’m focused on whether my right leg is listening to what I tell it to do.

 And when I’m driving, ha! No one can tell shit. Now, that whole not walking with cane or anything means I’ve got to use my disabled placard or at least park close to the entrance. It’s crucial because I need to save my legs for when I get into the store. The other night I had to go to Walmart. The pharmacy was threatening to put my meds back if I didn’t get my ass down there and I needed a few things anyhow. It’s 5pm on a Friday – the WORST time to attempt a Walmart run. Everyone is getting off work, they need a couple things for dinner and whatever festivities they have going on for the weekend, they need their meds…you know, they’re in my exact situation.

 Funny thing about us all being in the exact same situation is that we think OUR thing is more important than THEIR thing. And sometimes that makes us not be so nice.

I’m in the crowded parking lot, and there’s no parking. Like ANYWHERE. I circle around again, and see someone right up front is leaving. YES! It wasn’t a disabled spot, but it was literally the next one over. Still perfect. This is L.A. county. You learn to drive aggressively or get the fuck off the road. The second they pulled out, I swooped in. No, no one else had dibs – I had been waiting first. It takes me a minute to get out of the car. In that time, the disabled spot next to me opened up, someone pulled in, and suddenly there’s a tapping on my window. It was a small, older woman probably in her late 50s/early 60s, bundled in a coat with her purse in hand. I rolled down my window just a little (this is Pomona, I trust no one.) And the conversation went like this:

 Woman: I was waiting and you just…WHOOSH! Came so fast and took it!

Me: Oh, you were waiting? Yeah well, I was too. You probably couldn’t see my car from that angle. It happens.

Woman (annoyed) YOU were waiting too??

Me: Yep. *shrugs shoulders*

Woman: Well, you’re lucky you’re not disabled!

Now, there’s two ways I could have responded to this. And if you know me in real life, you know I’ve got a fuckin’ mouth. But I was tired and nauseous (why I was at the pharmacy) but also, I know how she felt. I totally get it. So instead of saying, “Fuck you, you don’t know me!” it went down like this…

 Me (Holding up and waving my disabled placard): Actually, I am disabled. I had a stroke.

Woman (calming down): Oh?...You…you are disabled? A stroke? My husband too. He’s in the car. That’s why I needed the parking spot.

Me, smiling: Oh I understand. Finding the right spot can be so frustrating.

Woman, starting to giggle: Oh yes, it is! I worry about bringing him. And now…well now I understand you.

Me, also giggling: Yeah, me too. I’m glad you said something actually. Happy holidays! 

I got out of the car and finished what I set out to do. Instead of being fueled by rage and spite like my usual self, I walked around the store feeling all warm and fuzzy. (Don't get used to it.)

 It turns out when you talk to people, you understand them a little better. FUCKING WILD, FAM. 

Now listen, there is nothing Zen about me. I'm as bah humbug as they come so no, the holidays being upon us does not make me nicer. In fact, it stresses me the fuck out. I imagine a lot of you are already feeling it too. So maybe, just maybe when that stranger comes across like a fucking asshole, we can try taking a deep breath and consider maybe they're as frustrated as we are. I don't know. I'm going to try more of that anyhow. Peace.

This is My Toe, Officially in the Water

 Sorry, no feet pics. Those cost extra.

 Apparently, I’ve been saying, “I need to make time to write something and post to my blog” for *scrolls old posts* SEVEN YEARS. I couldn’t help but notice that my last entry was posted in December of 2016. While I don’t dive too far into politics here, I will say that the heartbreak and mental burnout that overcame me by the end of 2016 impacted my willingness to share much of anything outside of pure unadulterated rage. It was me, my soapbox, and Facebook for a while. Then that grew tiresome, and I turned to shitposting as many of you probably have.

 What the hell am I doing here now? Mentally, I didn’t abandon this project. It’s always been floating around in my brain. A dear friend came across my blog recently and shot me a message along the lines of “So…were you going tell me you have a whole ass blog?” I’m paraphrasing. I found myself embarrassed. I wasn’t embarrassed that they read it, or that it exists; I was embarrassed because I’d abandoned my outlet. This was my little thing that was for me, that helped me organize my brain, and that preserved the funny and scary little stories about my life. Why the fuck did I let go of that? Quite a few reasons actually, but each one of those reasons was rooted in fear. I confided those fears in my friend, in rapid-fire verbal vomit fashion, and they replied, “but yeah now you know you can type what you want to type.” Actual quote.

This is the first post of what I expect to be a revival of my little corner of the blogosphere. Consider it my warm up post. I have a lot to share: experiences travelling and going on little solo adventures while disabled, my fitness journey as a chubby crippled girl, SEX, pregnancy and abortion… OH WE ARE GOING THERE. And I hope you come with me.

That Time I Broke Santa

About a month ago, my son was reading Superfudge by Judy Blume. It’s told from the older brother, Peter’s, perspective and involves the crazy antics of his little brother, Fudge. It was so much fun sharing one of my childhood favorites with my son, giggling past bedtime because he couldn’t put it down. Then we got to “Chapter 10: Santa Who?” I thought since it was a book for kids, it wouldn’t blatantly say that Santa wasn’t real. Then I braced myself as he kept reading aloud. I remembered this book is intended for children older than my son. Children who already know the truth about Santa. Then it happened. He stopped mid-sentence, made that WHAT THE FUCK face, and said “WAIT. Santa isn’t real?”

I don’t lie to him about big things. We are a secular family and I do my best to encourage analytical thinking. This means I don’t shy away from tough questions. In fact, I never told him Santa was real. It’s something he picked up from other kids, so I let him believe. I knew eventually his critical thinking skills would kick in, and it would be a lesson in intellectual discovery, and all would be well. BUT JUDY BLUME FUCKED IT ALL UP. She planted the seed that his little mind wasn’t ready for. For the next two weeks he bombarded me with questions. I kept answering with more questions. “Well, what do you think?” “What makes sense to you?” And on and on. It got to the point that I was going to have to tell him, because clearly he was ready.

Here’s where Cousin Dick comes in. I have a second cousin who plays Santa every year. He’s the real deal. Seriously. LOOK AT THAT FACE.

That beard is real, people!

He’s amazing, yes? He had shared a story about a little girl who was doubting Santa and he was going to have a talk with her about how Santa is more of a feeling, an idea about love and giving, and not so much an old guy in a red suit. Grown-ups just use Santa to help explain those ideas to small children because sometimes it’s easier for them to understand that way. I told him about how my son is at that same point, and he offered to come over and have the talk with him.

I thought, “WOW! This is going to be so incredible! He gets to find out the real meaning of Christmas spirit from Santa himself! I better make some room on the shelf for that Mother of the Year award, because OBVIOUSLY.”

Cousin Dick came over in full Santa regalia along with his son, Robert, the elf. They walked up to the apartment ringing bells, ho-ho-ho-ing, the whole bit. My son answered the door and his face lit up. He didn’t care it was two weeks before Christmas, Santa was at his door. So they come in and have some friendly chit chat about being naughty or nice, then cousin Dick looks at me and says, “Should I go ahead and tell him the other special thing about Santa?” I should have stopped him. I should have aborted the mission. The kid could have figured it out later. But nope. I said “sure!” My cousin gives him a lovely talk, explaining that he’s not actually Santa, but Santa represents the holiday spirit. He tells him that giving isn’t necessarily about presents. Even when we feel have nothing to give, we can still give a smile, a hug, kind words. It was a beautiful talk, really. My son enjoyed it and understood.

After they left, something didn’t seem right. I asked my son if he was ok, and he said he was fine. But I’m his mom. I know better. “Do you need a hug?” Yep. Tears. I fucked up. He wasn’t ready. I explained to him that I thought it was time because he was asking so many questions. I am not going to lie to him. “I’m your mother, how can you trust me if I tell you lies?” I also said “I’m sorry.” He seemed alright after that. When his father got home, we sat at the dinner table together. He blurted out, “Cousin Dick came over and told me Santa isn’t real! How was work?”

The next morning I thought we were ok. It turned out he was just in between stages of grief. He reached the anger phase over his bowl of Cheerios. “If you hadn’t broke Santa, I would still believe!” Then in the next breath, “I can’t believe you let me live my WHOLE LIFE believing in Santa!”

Me: WHOA. STOP RIGHT THERE. I never told you Santa was real. It was just something you chose to believe. Not everyone believes the same things. Just like with God. (I have a gift for making things worse with terrible analogies.)

Kid: Wait. Is God real?!

Me: Hell, I don’t know! No one does!

Kid: Fine! Then I’m going to believe in God!...like 55%!

Me: OK. That’s OK. You can believe in God. My point is that I’m not going to lie. I don’t believe in God. Some people do. You believe what makes sense to you. Santa made sense to you so I didn’t stop you.

He sulked all the way to school. I came home and cried. I have never pissed my kid off this bad. His anger was spawned from genuine heartbreak. Damn, that is a crappy and powerful feeling. He got it out of his system though. He let me have it, and I deserved it.

A few days later, another mother at the school ran up to me at pick up and said, “I have the number to Santa! Let me give it to you and you can have him call!” She handed me the ad, and ran off to get her kid. I looked over at my son and said, “That might be fun. Would you like to call Santa?” He threw me the most “Are you fucking kidding me right now” face. Before he could answer with actual words (not that he needed to) I whispered, “We don’t need to call Santa. Santa’s our cousin and we already had him over, huh.”

And he smiled, with pride.

Bing Bang Bong

spasticity [spas-tis´ĭ-te]

Definition: Spasticity is a constant and unwanted contraction of one or more muscle groups as a result of a stroke or other insults to the brain or spinal cord. Over time spasticity prevents the normal voluntary contraction of affected muscles.

 

I don’t recall if I’ve previously explained spasticity in my posts.  I am open about what I can and can’t do and try to explain what my struggles are like, but I should give you all a better idea of why that is.

I turned to Google for a decent definition of spasticity and found quite a few. I chose the definition above from About.com because it’s simple, accurate, and I love that it refers to my stroke as an “insult to the brain.” Well no shit! You don’t say!

What it means is that when part of my brain was killed off by the insult, er stroke, the rest of my brain wasn’t sure how to talk to the right side of my body.  Some things it has figured out, some things it won’t communicate at all (paralysis), and yet for other things it won’t shut the hell up. Spasticity occurs when the brain won’t shut the hell up.  It keeps sending signals to the nerves (in my case, my shoulder, fingers, and toes) so they are constantly tightening without me even knowing it.  Imagine flexing your bicep as hard as you can and not letting it go to relax.  Hold it…hold it…yeah, like that…keep holding… for several years.  Do you know how difficult and painful it would be to force yourself to extend your arm after that?

I realize a medical professional would probably explain this much better and give you a far more accurate analogy. Despite how awesome I am, I am no professional.

The muscles in my shoulder are constantly contracting and tightening up.  As numb as I am, I do have some feeling.  It can be excruciating to reach for things, to let my arm hang at my side, and if you want to know just how many swear words are in my vocabulary, pull my arm back.  It hurts like a motherfucker.  I have a serious fear of getting arrested because of this.  Wait, what? MAN, YOU DON’T KNOW ME.

The best thing I can do for it is stretch.  Stretching doesn’t cure it, but it helps loosen the muscles just enough to ease the pain.  Gravity pulling on my arm makes it too hard to lift it well, so I have to lie on my back to get it moving.  I sometimes need someone else to help lift it when it’s an especially bad day.  The other problem area is my toes. They don’t hurt because I can’t feel them.  Winning!  As I walk, my toes start to curl under.  I don’t notice until I start stepping on my toes and falling over, launching me into Human Pinball mode. Human Pinball mode is when I ricochet back and forth between the furniture until I can safely come to a stop.  If this were a sport, I’d be a World Champion.

I have mastered the art of not falling.  That is not to be confused with the art of walking.  I walk, but I stumble; only I do it with grace and skill!  Bing bang bong, bouncing down the hallway I go without ever hitting the floor.  Like a ninja, I grab at tables and chairs and you don’t even notice I’m doing it!  Maybe you do and you just don’t say anything because you are polite and your mama raised you right, but still!  In these past four years since my stroke, I have only fallen – like seriously hit the floor – three times.

Two of these falls occurred within 48 hours of each other.

And those happened this week.

You could say I’m on a roll.  (You see what I did there.)  I’m laughing at myself right now, but the second fall was a bad one.  I completely ate shit.  There was a box of random crap that needed to go to the dumpster.  It wasn’t heavy; it weighed about the same as an empty cardboard box.  I figured I could at least get it out of my living room to just outside the back door.  Due to the drop foot in my right ankle, I use my hip and knee to kind of fling my foot in the direction I need to go.  I realize that doesn’t sound terribly efficient, but remember I’m a Master Ninja.  I got this. Well I did, until my dragging foot caught on something (chair leg I think) and sent me flying forward through the back door.  I took out the screen and everything!  My arms, which had been holding the box, slammed down on the metal, sliding door track and my knees took the rest of the impact.

Falling as a grown-up sucks.  It takes a minute for your brain to realize that your body has had the audacity to pull such bullshit. I mean, really. REALLY? I’M ON THE FLOOR? THIS JUST HAPPENED? Consumed with indignation, I forgot to breathe.  As I started to pant, I started to cry, partly from the pain but also because I was just so overwhelmed with that are-you-fucking-kidding-me-right-now feeling. 

My husband was still home, thank goodness.  He ran over to me, scared shitless, and tried to help me up.  I couldn’t talk yet, but he could see that I needed a minute.  I needed to just sit there on the floor and breathe and cry for a minute before attempting to get up.  Once I was up, I sat in the chair that had brought me down, and I sat there for a long while.

This is my normal.  I forget that my “new normal” means there is also this piece that sometimes feels crappy and comes crashing in my face with a rather aggressive, unfriendly reminder that I’m still not invincible.  If it weren't rough enough having thoughts that won't simmer down, now my brain won't stop talking to my muscles behind my back.  I am grateful that most of the time I get them to tone it down just enough to stop trying to kill me.  Eh, that screen door needs to be replaced anyhow.

 

My Vans Down by the River

 It is with a heavy heart that I pronounce my beloved Yo Gabba Gabba Slip-On Vans officially…*sniffle*…DEAD.  They have suffered the woes of wear and finally cannot go on.

The carnage. My cat, Selina looks away, blinking away his tears.

  

Of course I'm being dramatic.  But I really am quite upset over this. These shoes have served me in ways that nothing else has. These shoes have been with me through a lot, and always came through when I needed them.

Not kidding.

I bought these shoes 4 years ago, just 3 weeks before my stroke.  We had been out shopping for a new pair of shoes for my son when I noticed these on sale.  Why on earth would I look at shoes at Journeys Kidz? Because I stand 4 feet 10 ¾ inches  tall, and my shoe size is 3 in Little Kids.  Finding shoes is a nightmare.  I avoid shoe shopping because it invokes in me a passionate fury.  When I saw these, I thought “oh they’re so cute! I wonder if they’ll fit!” And they did. *cue angels singing*  I worked in a corporate office back then.  I already had a reputation for being a little eccentric so of course I wore them to work.  I mean, of course.   How could I not show these off? 

My beloved Vans, brand spankin' new.

I wore them to work on June 8, 2011.  I remember that day because that was the last day I ever went to work.  That day, I had an ischemic stroke in my left brain stem.  I didn’t understand what was happening but I knew something was wrong.  My co-worker urged me to call my husband to come pick me up.  While we didn’t know it was a stroke, it was clear I shouldn’t attempt to drive home.  I ended up in an ambulance later that day headed for the ER.  Over the next 3 days I lost all use of the right side of my body.  The Neurologist explained it was an evolving stroke.  It didn’t just strike and leave; it struck and didn’t stop.  By the third day I had total paralysis on the right side, save for my face.  I didn’t get to wear shoes much for the next week while I remained in the ICU, so my Vans – my fun, colorful, conversation-starting Vans – stayed tucked away in that big plastic hospital bag marked “PATIENT BELONGINGS.”  Those stupid bags.  I hate them.  I’ve never been to prison but I imagine that’s what it feels like.  Forced to strip naked and all of your possessions reduced to a damn plastic bag.  I couldn’t even keep my bra on!  Holy mom boobs, Batman have you people no mercy?

Whole world. Right here. And they NEVER write your name on it. Fascists!

After 8 days or so they shipped me and my bulging plastic bag of all that remained of civilization to inpatient rehab.  At this point, I was wheelchair-bound but not able to push myself or get in or out of it in my own.  This is where I would learn to do that, and eventually to walk again.  So I got to wear my Vans. 

Me, wheelin' to the cafeteria, desperately hoping they'll let us have salt today.

Four years later, I still suffer from “drop foot.”  This means that even though I can walk with a walker or a cane, my right ankle still hasn’t learned to move again.  My foot just hangs there.  Try putting on a pair of shoes without using your ankle.  Try it.  HA!  It sucks balls, doesn’t it?  Not only can I not put on certain shoes, very few shoes will even stay on while I walk.  I’m a California native.  I’m fairly certain there’s a state law declaring flip-flops our state shoe.  I mourned the day I threw my collection (yes, collection) away because I could no longer wear them.  I did try wearing Converse and other lace-up sneakers but my right hand and fingers have a hell of a time getting those on.  If I’m in a hurry or already too fatigued for the day, that’s just not a fight I’m up for.

My Vans were slip-ons.  Masterfully designed to stretch and conform to the foot and not need any stupid laces.  And they stayed on.  And…AND they were a perfect SIZE 3.  Oh sure there are other Vans out there.  But they’re not MY Vans.  They didn’t hold me in place when I rose from my hospital bed for the very first time to try to stand.  They didn’t help my good foot push my wheelchair all around the rehab place fighting to reclaim some independence, or help me hold my toddler’s hand to take a walk around our building for the first time.  These filthy broken shoes look like they should be tossed in the river and forgotten.  But I can’t let them go yet.  These Vans, the ones broken in to my tiny swollen feet, walked this road to recovery with me.