THIRTEEN

Thirteen. It's been 13 years since my first, most damaging stroke. My son was just shy of his 2nd birthday. I couldn't hold him. I certainly couldn't chase after him. Shit. That was the last morning I ever ran after him. 

Rereading this post after all this time, its's clear how naïve I was, or just exhausted. The thing is I was paralyzed, completely on my right side. I typed that out on my phone with my left hand. I am not a leftie. I remember thinking I'd be back to work in a couple days, because I was very busy and surely the doctors knew how to fix this. Spoiler alert: they didn't; they couldn't. 

I didn't write about this on the 10th anniversary. I don't remember even posting about it on social media. Strange, considering it was a big milestone. I honestly forgot. I'm friends with a lot of fellow stroke survivors, "strokies" as we fondly refer to ourselves. And on stroke anniversaries they refer to their "rebirthdays" and we give virtual high fives because fuck yeah, we've made it this far. But when it comes to my situation, I don't see a cause for celebration. I'm not bitter, and I get that I have a lot to be proud of and thankful for. I just don't want a high five for having my life derailed. I don't like to look back on that time, preferring instead to focus on right now and things to come. Frankly, I'm not in the clear and I won't ever be.

I was 32 when that stroke hit. While it left me permanently disabled with right side weakness, it didn't affect my speech or cognition, nor any of the muscles in my face. Then years later, in the summer of 2019 (I think - my memory fades) I woke up and got ready like I do every morning. My tongue suddenly felt weird. I went to say something to my son, and I couldn't speak. It came out as grunts which rapidly turned to frantic whimpers as tears streamed down my face. I knew what was happening but couldn't say it. We were visiting my brother's family up North, and my husband and brother had stepped out for a bit. I was able to use my hands so I sent a text to my husband telling him, "I'm having a stroke. My tongue is paralyzed. Can't talk."

They called my sister-in-law who was at the house with me but in another room. She came running in and found me crying and trying to talk. And slowly I could. At first it sounded like when you slow down the playback of an audio recording. Then I sounded normal again. All of this happened in maybe 10 minutes. 

It wasn't a full-blown stroke. It was a TIA, Transient Ishemic Attack. (I find the name funny. A transient attacking my brain - just my fucking luck.) These are also known as mini strokes. They are temporary blockages in the brain that resolve themselves and typically do not result in permanent deficits. It happened half a dozen more times before that summer was over.

Why the fuck was this happening? In order to find out I had to do what I did back in 2011 when I found I had become paralyzed at 4am; I had to light some fires under the right asses. It was my pharmacist who said, "Stop calling your neurologist. Drive over there and refuse to leave until they see you." 

That pharmacist saved my life. It turns I have multiple tiny blockages in various small blood vessels in different parts of my brain. 

                                         

I was referred to a neurosurgeon and they discovered that my right carotid artery is completely obstructed. It's done. It's been done. In some cases, a stint can be put in to open it to allow the blood to flow through. In my case, the obstruction is so deep that attempting the procedure could kill me. Again, just my fucking luck. The test they performed to discover all this is called a "cerebral angiogram." I was scared shitless to have it done. I called my best friend and told her there was a 3% chance of something going wrong, and she said, "Don't worry. You're not that special. You won't be one of the 3%." And that's why we've been best friends for 30 years.

When a neurologist tells you, "We are sending you to the top neurosurgeon in our area and you need to be seen right away" that does some shit to your mental health. I had to start considering that I may not be alive much longer. Oh relax. I'm still here. And how the fuck is that? How am I alive when a bunch of my brain is blocked off? BEHOLD: THE CIRCLE OF WILLIS.

"At the base of the brain, the carotid arteries and vertebral arteries come together to form the Circle of Willis. This is a circle of arteries that provide many paths for blood to supply oxygen and nutrients to the brain." UNC School of Medicine

Basically humans evolved to create a backup system of networked blood vessels so when one (or more) fail, other blood vessels pick up the slack to get blood where it needs to go. Yay science!

And that is the context in which I live my life. I've known about these unfortunate developments in my brain for 5 years now. While at first I felt like a ticking time bomb, I don't think about it a whole lot now. It's not pleasant to think about. I cringe and get sad when these posts pop up in my Facebook Memories because while it was 13 years ago, it isn't really behind me. That's a privilege that won't be mine. 

I Am Courage

A friend recently gifted me a sparkly medallion with a heart and wings on one side, and the words "I am courage" on the other. I love all things shimmer and sparkle - a detail about me that my younger self would have never admitted. I promptly hung it from my rearview mirror, partly for adornment, partly as a reminder that there are people in my life rooting for me, believing I can do big things. I know there are folx who place great significance on trinkets. They believe in crystals and amulets and all sorts of tangible things that conjure the intangible. I've mentioned this before but it bears repeating: I am an atheist; a skeptic by default. I was the little girl in Catholic school scrunching up her nose at the nuns thinking, "ehh...that doesn't sound right." 

The thing about we atheists though is that people perceive us as a collective group sharing values and perspectives the way religious people do. It is presumed we are like-minded. We aren't. The only thing we agree on is that God(s) aren't real. That's it. That's the extent of our agreement. I have to remind myself of this because I see things happening with atheists I've known for years and so much doesn't make sense to me. I see a movement toward embracing astrology, the esoteric, and pseudoscientific healing. It baffles me. But then I consider what we've been up against. A rapidly devolving hell scape of oppressive politics, Covid and the overwhelming loss of life, a recession...these are enormous shifts that are bound to make anyone grab onto what they can to make sense of this fucking mess. To find some meaning and a reason to have some goddamn hope. 

I drive around town every day with my courage medallion hanging from my rearview mirror. It sways gently with the movement of the car, sometimes swinging more rapidly as I pick up speed. I spend a lot of time alone in the car, singing off-key, bouncing in my seat to righteous tunes. That's also where I do a lot of thinking. Daydreaming and scheming. That's where I stand at the edge of the rabbit hole of "what if" and dive into the realm of "I can." Fantasies become game plans and whimsy becomes courage. Hell, the fact that I can drive at all after having been paralyzed is a feat in itself.

✨ MAGIC ✨

I come to a red light and reach for my shimmery trinket. I adjust the necklace from where it hangs to make sure it looks just right, while my mind runs through scenarios and possibilities and "definitelies." It's a tangible reminder that I can do big things, and that right there is magic.

Kumbaya, Bitches

When I was in my early 20s I took a job at a church. Not a church like you're thinking though - their teachings were rooted in metaphysics, the occult, and spiritualism. New Age stuff. I wasn't a member there; I was just young and open-minded and needed gainful employment. In fact, I was and still am very much a staunch atheist. One of my duties there was helping to answer the phone. This meant taking calls from psychics and witches who were seeking help and comfort with their struggles in both daily life and spirituality. My job was to listen. Give a safe space to someone to speak openly about what troubled them, even when their troubles included aliens, past lives, and astral projection. And I was good at it. My atheism never stopped me from feeling empathy. And I knew how to speak to them in their language, on their terms, so that no one ever noticed I didn't share in their beliefs. 

My experience working there taught me so much about people. How giving someone an ear, a safe ear, can move them like magic. It's a skill that I've carried with me to every job' I've had since. Today I had a client call who was distraught over a letter he received from the IRS. He calmly gave me some backstory, then went on to his current situation. As he was explaining I realized he didn't really have a question - he was looking for reassurance that he had his facts straight. Then he mentioned his wife. Every word was carefully crafted to not expose what he was actually thinking and feeling. After all, he's telling me, a woman, who may very well also be a wife. As I felt his nerves bunching up, I threw him a rope: Dude. I'm married. I totally get it. 

This man was preparing to have a necessary, important talk with his wife that was going to inevitably also be an "I told you so!" situation. He explained, "I have to tell her all this and she's going to explode! But she's the one that didn't think it was important and now we're in a legal and financial mess and..."

"When she blows up, give her my number. That's when you let her hear it from me. Then we'll talk about how to fix it. Because man, this is fixable."

As we're going back and forth discussing details, his anxiety and emotions are all over the place. He notices another letter from the IRS that hasn't been opened yet. Thinking it's a duplicate of the first letter, he rips it open hoping he'll have a clean copy he hasn't scribbled notes on to show me, but instead he starts screaming, "OH MY GOD! OH MY GOD!"

A long pause...

I stayed quiet and could hear his breathing change. He was crying. It was one of those emotionally exhausted cries. This man had been bracing himself for a new legal battle with the Federal government, a major financial setback of tens of thousands of dollars, a disruption to marital bliss (we'll just pretend that's a thing for the single kids,) and the fucking holidays.

"I got it wrong," he said. I told him to take a deep breath. Take a moment. It's ok. He, through tears tells me he misinterpreted the first letter. Turns out the whole thing ties into an issue that his attorney was already working on. The realization and relief that overcame him made him break down. This is a grown ass man. A successful business man. This is not a man who goes around crying let alone in front of people. He was embarrassed. I had been in this very position so many times before at that old job. I didn't rush him off the phone or make him feel like he was wasting my time. I gave him a safe space. I advised him to make sure his attorney gets those letters. And depending on the course of action he recommends, we're here if he needs us. 

Comforting and consoling people is not in my job description as an office manager. I'm not saying it should be in yours. What happened today wasn't about doing my job - I mean it was, but in that moment it was about just having some fucking compassion. I thought about all the times I was hanging by a damn thread. Hell, pretty sure I was in that headspace like two days ago. My head was going to implode. It took a friend telling me to take a deep breath to find my center. I'm not necessarily saying we need to kumbaya the shit out of every interaction. (Maybe just hum it a little.)  Recognize the freak out in them is like the freak outs you've had in you and acknowledge it. I'm getting a reputation around here for being good at what I do, being a fuckin' bulldog when necessary, but most importantly, just being authentic and taking a genuine interest in the people we deal with. That's the good stuff. 

Namaste, bitches.

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.