Tuesday, October 14, 2014

That Time You Died.


It’s been over 3 years since my stroke.  My son was just shy of his 2nd birthday when it happened.  It was difficult at the time, for all of us.  I had to live in a rehabilitation facility for a couple of weeks, in addition to the 8 days I was in ICU.  That’s a long time to not be with your toddler.  My husband and my mom took turns bringing him for visits, but it wasn’t every day.  People had jobs and errands and life to worry about aside from driving all the way out to where I was to visit.  The longest I had to go without seeing my boy was 4 days.  I’ll never forget the look on his face when he walked into my room and saw me.  He hesitated before he smiled and ran to my bed.  He had to pause and stare at me, to make sure it was really me.  It breaks me every time I think of that confused little face.

Fast-forward a few years.  He just started Kindergarten.  I’m no longer in a wheelchair, and my walker is just a normal accessory like my purse and sunglasses.  My kid has adjusted to a disabled mom because it’s all he knows.  One morning when we arrived at his school, he heard me mutter “damn it” under my breath, and asked me what was wrong. I explained, “I forgot my cane, but it’s ok.  It’s a short walk.  I’ll make it.”  And without missing a beat my kid replied, “It’s ok, mom. None of the other kids’ moms have canes either.”  My observant kid didn’t want me to feel left out.

I don’t think it’s fair to take credit for his strong sense of empathy.  He is his own little person.  I think what he’s had to live with so far has helped shape his already existing personality.  What I wasn’t sure about until recently, was whether or not he even remembers those 3 weeks we were separated from each other.  He wasn’t even 2 yet, so it’s quite possible he has forgotten.  One evening I was at the kitchen table with my laptop, and he noticed my eyes were watery.  Then this conversation happened:

G:  Why are you sad, mama?
Me:  Well, my friend’s mom died and I feel sad for her. I’m alright, just a little sad for my friend.
G:  I remember that time you died.
*knife, meet heart*
Me:  No, silly. If I died I wouldn’t be here. Remember we talked about how when people die they aren’t here anymore? What do you mean that I died?
G:  I remember that you died.  You went away for a really long time because you were dead.  And then you came back.  And now you’re here!
(I could insert a Jesus joke here, but I won’t.)

     We had a talk about death and illness.  I explained that I’ve never died, I just got really sick and had to stay at a place where they could help me get strong enough to come back home to him and Daddy.  Since the stroke, I can’t control my tears.  I just can’t.  The left side of the brain is where all your filters are.  It helps you control how you display your emotions.  It’s difficult when discussing serious things with small children, because I want to be frank and matter-of-fact so he isn’t scared, but that is hard to do with tears streaming uncontrollably down my face. 

The thing about being a mom is you’re constantly second-guessing yourself.  Add an extra layer of physical disability to that and there’s this whole other hot mess of “well that works great for other parents and maybe that would work for us, but I can’t even do that because literally, I can’t do that.”  Then I look at my kid, and even with all his temper and sarcasm – which we’ll just blame on dad since he doesn’t read my blog – and I see an incredibly well-adjusted, emphatic kid.  Maybe I’m figuring out this whole mom thing after all.  Or maybe I’m failing miserably, but he’s only 5 so there’s plenty of time to save up for his therapy.

Wednesday, June 12, 2013

Brain Farts and Afterthoughts



It’s been 2 years since my stroke. The anniversary was actually 4 days ago, but I’ve been so busy, I’m just now writing about it. Two years is a long time. I spent the first year expecting big things to happen: get out of the wheelchair, ditch the walker, go back to work…Then the first year came and went and not all of those things happened.

I’m still not able to work and I admit that for a long time that was a massive source of stress and anxiety. Women in their early 30s are either career-oriented or embracing their domestic prowess and kicking ass on the home front. I have never considered myself a stay-at-home-mom (SAHM,) nor have I considered myself cut out for it. Now that I’m disabled it’s a bit of a stretch for me to identify as a SAHM. So what the hell am I?

I’ve spent all this time waking up with nowhere to be, no schedule to follow and it has taken a toll. When you’re working you fantasize about that sort of thing, but it’s a bit shocking when you get it. After my 1st year anniversary I realized that I wasn’t going to ever not be disabled and if I don’t find something to do with myself, I’m going to lose my damn mind and drag my poor family down with me. So I decided to go back to school.

WAIT. Hold up. I’m not actually going to school. School is coming to me through the magical powers of the interwebz! I decided to take two classes online through a local community college, just to see how it goes. I’m happy to report I’m kicking ass. You know the best part? No, it’s not the glimmer of redemption in my college professor father’s eyes or the “Excellent work!” comments from my teachers (OK yeah it kind of is those things) but the really super-duper bestest part of the whole deal is that I get to wake up in the morning and say,

“I GOT SHIT TO DO TODAY!”

It’s a glorious feeling! Oh, you’re too busy to have lunch with me? Well that’s fine because I have a paper to write. BOOM! You know how fucking good that feels? I have deadlines now! I have rules to follow and bureaucrats to roll my eyes at! Oh sweet heavens, I have a purpose!

It’s incredibly liberating to know that I’m studying what I want and not what will get me a job. This is for ME. I’m getting a Liberal Arts degree with an emphasis in Sociology because I want to understand people, so that I can write about them. Actually, I want to understand people because in turn, I’ll better understand myself. There are so many facets to who I am: Mom, Disabled, Atheist, Multi-ethnic, Woman, 30-something, child of an immigrant…the list goes on. Understanding these elements from a sociological perspective will equip me to reach out to others like me. And holy fuckballs will I have loads to write about!

So that’s what I’ve been working on. That is why I’ve been so busy. The day of my 2-year stroke anniversary, June 8th, I was studying for finals and finishing up a term paper. I was so busy I didn’t realize what day it was. I had a total brain fart about it. Later that evening when I finally remembered, I couldn’t help but feel comforted that June 8th was an afterthought. That day changed my life but it hasn’t defined me. I don’t have it marked on any calendars, and I sure as hell didn’t sit and brood over it all day. It’s worth mentioning, but that’s about it. 


Monday, March 11, 2013

Limbo


I’m over a year and a half out from my stroke and the lists of things I can and can’t do both continue to grow. While most of it feels normal now, I still have those moments that make me feel proud or totally pissed off.

I’ve always fancied myself an optimistic cynic; a fucked up Pollyanna, if you will. The other day I had an epiphany. It came to me while watching Mickey Mouse Clubhouse. Shut up. It happens. I had this revelation that there are things I will never ever do again, and I'm glad! Your hear me? GLAD. GLAD. GLAD!

I will never ever be obliged to dance the Limbo. Seriously, fuck the Limbo. I hated that stupid dance, game, whatever it is - frankly, I think it's a bit of a stretch to refer to it as a dance. As a disabled person, I am not physically able to do it. Before the stroke, I would have been an asshole for being a grouch and not wanting to play. But now, if you ask me to do it, you’re the asshole!

Surely, there must be other things I loathe that I can no longer be expected to do. I spent much of the afternoon with a maniacal smile on my face, thinking of more things that I can’t ever do again. Here are some highlights:

Charades. Whenever they show people playing Charades in sitcoms, it’s always some dorky suburban couple giggling with their boring couple friends on dreaded game night. Barf. Charades is really one small step away from being a Mime, only no one gives you money to do it and you have to perform in front of your friends. Thankfully, my limited use of the right side of my body makes me a terrible player. You guys go ahead. I’ll mind the bar.



Team-building exercises. If you have ever worked for a large office, you know what I’m talking about. You get stuck in a giant room with your fellow disgruntled co-workers and given a task – like build a massive house of cards without any of them overlapping – that can only be accomplished together. It is bad enough that there is pressure to participate and not look like a dick in front of your boss, but now you have a whole fucking team of people depending on you to not screw it up for everyone. There’s a pizza party on the line and damn it it’s gonna be your ass if you tip the cards! Don’t tip the cards! Lucky for me, I’m not touching the damned cards. Between my wonky hand and my vertigo, I’m likely to wind up lying on top of the house of cards. So no.


Sports. I’ve always hated playing sports, so this is a huge win. I can’t run anymore. It’s not like I just have to try and it will come back. No, I actually can’t. So picking me for your team would make you a dick. (Unless you want me to keep score. I’m OK with that. I like having that kind of power.)



Outdoorsy stuff. See Sports above. "Outdoors" usually involves sports in the sun for an extended period of time. Ugh. Just ugh. And really, if you try to get me on a zip-line or a river raft, I’ll have criminal charges filed against you for attempted murder.

Assemble furniture.  I won’t ever have to hold two boards perpendicular to each other while trying to screw them together. I did try once, just to see. To no one’s surprise it ended with cursing and dropping boards on the ground. My right arm doesn’t extend very far and when it is holding something, those fingers are completely useless. This task is now solely my husband’s responsibility. I did give him moral support during the FOUR hours it took him to put together our son’s train table. I yelled out things like, “Wow, babe! It’s really coming along!” while I watched movies on the couch. Oh, think I’m insensitive? I’m disabled! Who’s insensitive now, biatch!
I will never have to stay up until 3am assembling a bicycle or art desk or anything else. Ever. Neener. Neener.

Aerobics class. I enjoy aerobics. It’s one of the few exercises I don’t mind – this goes for both before and after stroke. However, I have never thought the idea of sweating and shaking my uncoordinated ass in front of a group of strangers sounds like fun. Girls love to invite other girls to this sort of thing. “Hey! Wanna put on clothes that accentuate all your problem areas and then dance next to me and my amazing body, which make you look like the Hunchback by comparison?” Ick. Now instead of conveniently being sick that day, I just don’t get invited. I still get to look like the Hunchback when I exercise, but at least it’s in private. Go me!
 


Pollyanna was a righteous bitch. She played The Glad Game because she knew no matter how shitty life was, there was always something awesome to smile about and feel grateful for. And I’m grateful I won’t ever feel pressured to wear high heels again.


Thursday, January 24, 2013

My Turn Already?



One in five stroke survivors will have another stroke within five years of their first.  

1 in 5

Last week my number came up. (Sort of.) Last Tuesday, I was standing at the stove slowly whisking my homemade Thai Peanut Sauce. My 3 year old son was playing with his train set and hubby was upstairs playing handyman. I’m standing there, stirring the sauce, and it occurs to me I’m swaying. I tend to rock a bit due to the weakness of my right leg, but this was different. I was swaying hard. My breaths were shallow. I looked up at the wall and an overwhelming spinning sensation came over me. My first thought:  Just.Like.Last time. FUCK.

Then my mental checklist:

  1. Get to a chair.
  2. Check blood sugar.
  3. Scream for hubby.

Next steps are all contingent on Item #2. Dizzy spells can be brought on by a dip in blood sugar, so I knew to check that first. I don’t know how I remained logical in that moment because in my gut I knew what I was feeling. I pricked my finger and the glucose monitor read “177.” OK so it’s not that.

OH MY FUCKING AHHHHHH!!!!!!

And then I lost my shit. Screaming, scrambling up the stairs – albeit not the smartest move – to get my husband. He came running down and helped me up the rest of the way, still unsure of why I was freaking out. He was oddly calm. We checked my blood sugar on a 2nd monitor I keep upstairs. It was 173. Clearly my blood sugar was not the problem. He held my face and said, “Keep calm. Sit down. I’m getting the phone and calling 9-1-1.”

I said, “AHHHH! MY ARM! MY FUCKING ARM! AHHHHHH!”

I’m not very good with directions.

I felt the right side of my body turning to lead, very heavy, difficult to move. My son sat next to me and said, “Don’t be upset, mommy. Your arm hurts? I kiss it, OK?” He was so sweet and calm like his dad. It brought me back down from my hysteria.

EMTs came and took me to the hospital. They noticed the right corner of my mouth was drooping a little. After 2 CT scans and an MRI, they determined that it was not in fact a 2nd stroke. Good news. But it wasn’t nothing either. The Neurologist explained it was most likely a TIA, (aka “mini-stroke”) or a temporary exacerbation of the old stroke (whatever that means.) An artery in my brain stem is forever compromised from the first stroke. There is build-up there, and whether it’s scar tissue or something else doesn’t matter. It’s narrower. The arteries in the brain stem are already narrower than arteries in other parts of our body, so it’s an especially shitty place to have a problem. If that artery flexes or spasms, it can temporarily block blood flow to the brain causing stroke symptoms. The vessel then relaxes, blood flow is restored, and your body is like “Huh? What stroke? You’re just trippin’, dude.”

I'm alright. I was alright within a couple of hours. I spent the night in the hospital to make sure it had passed. I woke up the next morning still disabled, but not more disabled. I was back to my normal.

My husband and I realized that this may very well happen again. I am working hard to prevent it, but there is no guarantee that it won’t. It's a reminder that accepting our new normal comes with a greater responsibility of self-awareness and constant vigilance. It's a reminder that we're not like everyone else. But who the hell wants that anyways.

This isn’t a woe-is-me-oh-no-I’m-forever-doomed post. We all have our baggage, our ailments, our crap that we’re supposed to do but easily overlook due to complacency, laziness, ignorance…This is more of a flick in the earlobe; A reminder to not be so damn complacent.

I also can’t stress enough how important it is to listen to your body. My husband was on the phone with 911 within 15 minutes of the onset of my symptoms. You don’t have to be sure. You just have to act. Let the doctors worry about being sure.

CONSTANT VIGILANCE!

(I am disappointed in the interwebz for not having a sound bite of MadEye Moody for me to insert right here. So disappointed.)