Sunday, September 28, 2014

The Be Ok Blog

Hola!
Delaney winning Oly Pageant, which started this whole idea. 

So, I'm sure most of you already know this, but my pal Delaney and I launched a website the other day called The Be Ok Blog, which y'all need to check out. We've worked on this project all summer, pouring our hearts and souls into it, and we're so excited it's out there in the world now for y'all to read and share your stories.

So how did this start? Well, last year Delaney was involved with Oly Pageant, which raises money for Doernbecher's Children Hospital. She started The Be Ok Campaign, which is now run by Lauren Hemmert. After Delaney graduated she wanted to do more with the movement. She wanted to help teens that weren't in the hospital too, but just needed more positivity in her lives. You can read more about her story by clicking here. We are both incredibly passionate about spreading positivity and encouraging one another during tough times--and it's something I've always wanted to do, but didn't know how to approach, so when Delaney ran the idea by me this summer I was immediately hooked.

I'll still be writing here, but I'll also be, you know, working on The Be Ok Blog quite a bit (since I serve as its co-founder, editor, & writer), as well as going to school, having a social life, and working on Novel #2.

Please let me know if you'd like to be a part of The Be Ok Team by submitting something to us. We can't do what we do without you. Seriously. You can also follow us on Facebook too!

Check out our first page of submissions and what I wrote. My post is titled "Why I'm Here."

Again, thank you for all the support!
We really, really appreciate it!

Love,
Manders

P.S: Go support The Be Ok Campaign that raises money for Oly Pageant, which raises money for Doernbecher's Children Hospital.

Wednesday, September 3, 2014

Mt. Hood Kiwanis Camp Part 2

Momma & me in the hospital. 
Hola!

Before I jump into how my last week at camp went let me start off with a story.

Four years, three months, and around twenty-five days ago was my third day at Stanford's Children Hospital. I spent a week there, recovering from my second back surgery.
Click here to read more about my spine history!

Anyhow, on that particular morning I had my catheter removed, which was both convenient and inconvenient. Convenient because, well honestly, who likes a tube up their urethra? And inconvenient because this meant I had to get out of bed in order to use the restroom--not on my own, however.

That's the thing.
I needed a lot of help after surgery with motions such as lowering my underpants, sitting down, standing back up, and wiping myself, which let's be real sucks if you're used to an able-bodied lifestyle in which you're proficient at these kinds of things.

Well, on that particular day in the afternoon-ish my physical therapist came in and then quickly left, leaving his trainee. Her lack of confidence led me to believe she was just out of grad school. She'd been with me the past couple of days, but mostly just to watch. My sleep-deprived mom stepped out to fetch some coffee on the first floor, so it was just the two of us then.

These PT sessions involved relearning how to get out of bed, stand, and walk, which as many of you can probably imagine is a pain in the a** when all you can think about as you struggle is how easily you once did it before.

So...
Catheter Removed + Nervous Trainee - Mom = Awkward Bathroom Scene

We all knew it was coming to this.

So, yeah, I had a major case of Code Yellow. And like I was trying to hold it in because I'd rather have my mom or a nurse help me out, but desperate times call for desperate measures.

Me: Um, I need to pee.
Trainee: *looks horrified* What?
Me: Uh, yeah, sorry.
Trainee: Oh, do you, um, think you can hold it before your Mom gets back?
Me: Not really. It's pretty bad. I think standing up made it worse. You know... gravity.
Trainee: Oh, I see.

Not in this case...
We then proceed to the bathroom, which is just twenty or so steps around the bed, but good lord it's quite the trek when every freaking step takes a Herculean effort. During this journey my bladder filled up to its maximum capacity and it was in its burning stage. As she helped to stabilize me, Trainee's eyes kept glancing around the corner in hopes my mom, the PT guy, or a nurse would return. Turning around, I looked at her as if she knew what to do.

But she just stood there with a deer-in-the-headlights kind of expression.

Me: Oh... um, can you get my pants... please?
Trainee: What?

Now, I know this was really awkward for her and all, but honestly the damn was gonna burst at any moment. And the thing that irritated me the most was that she knew I couldn't do these things yet; she was my physical therapist for crying out loud! I had to talk her through everything. (Note: I was only 17 at the time, she in her twenties.)

Me: Yeah, first we gotta get my pants down and underwear off and then I need help sitting down.
Trainee: *looks around the corner again* Uh...

What was the problem? I'm a girl, she's a girl. It's unlikely she's never seen a vagina before. It's not like I had to do the doomed Number 2, all I had to do was pee.

Tears brimmed my eyes and that's because either A.) I was about to pee my pants or B.) I didn't feel human in that moment. Instead, I felt like something other, something scary without feelings. Something that turned off the humanity in others.
It's one of the worst feelings in the world...

Interestingly, this memory was lost to me until the second week of camp when I acted like Trainee... (We'll get back to this later.)

In my first post about camp I wrote: "Um, so tonight I am writing a post about my first week at Mt. Hood Kiwanis Camp and I'm not going to lie... I'm not really sure what to write. And I know that sounds weird because there is definitely plenty of stuff to write about, but I can't write about all of it for confidentiality reasons and partly because it's kind of difficult to put into words."

This is still so incredibly true! There's only so many words I can use to describe my experience. Honestly, you had to of been there in order to fully understand what I went through, but, as always, I'll try my best to explain what I learned.

At the beginning of this adventure, during training, one of the Camp Directors had us all circle up in the middle of the recreation field where she drew three circles in the dirt; first a small one, then a medium circle around the smaller one, and then a larger circle around the medium one. She told us about pushing beyond our comfort zones, which is kind of inevitable at camp, but you also have a choice to push beyond that.

The first week I had a high functioning camper with a form of down syndrome who could dress himself, go the restroom without assistance (except for the occasional reminder to wash his hands), and was verbal... actually he was extremely verbal.
Relatively speaking, he was one of the easiest campers in our group. The only aspect about him that'd wear you down during the thirteen hours a day you'd spend with him was that he had a short-term memory and liked to ask a bajillion questions a minute and play tag. (Let me tell you, the boy freaking loved a good ole' fashion game of tag.)

Here is how a conversation with him would go:

Camper: You have shorts on!
Me: I sure do!
Camper: Why?
Me: Because it's hot outside and we're going to the lake.
Camper: Why?
Me: Because we're going canoeing.
Camper: Oh yeah! Why?
Me: Why do you think?
Camper: Fun.
Me: That's right, fun.
Camper: Where's my momma?
Me: She's at home.
Camper: Why?
Me: Why do you think?
Camper: Fun.
Me: Sure. Yeah. I hope she's having fun at home.
Camper: *pokes me* Tag! You're it! *holds his hands up in a surrender kind of way* No tag backs!
Me: Haha! You got me, but let's think of something else to do since playing tag in a bus is kind of dangerous.
Camper: Ok.
Me: Ok. *sighs and looks out the window for a brief moment*
Camper: Where are we going?
Me: To the lake!
Camper: Why?
Me: You don't remember?
Camper: *shakes his head*
Me: We're, uh, going canoeing.
Camper: Why?

You get the picture.

He was definitely the chatter box, but he was also incredibly sweet and willing to try anything too. My favorite conversation with him went like this:

Camper: You're funny!
Me: Oh, I am? Well, thanks!
Camper: How'd you do that?

Haha! Isn't he hilarious?

One of my favorite memories of him was when I'd come into his room to wake him up in the morning and he'd be smiling in his bed and say: I was waiting for you!
Sweet moments like these kept me going.

Here are some things I learned from Camper #1. 
  1. Don't take life so seriously--go ahead,  play tag.  
  2. Life is really fun! (Especially when it involves fishing.)
  3. Answer questions even if your wrong; it's the trying and thinking about the question that's important. 
  4. It's always more fun to share with everyone. 
  5. Little brothers are really important; whenever you see your little brother tell him that you love him and give him a tender pat on the back. 
  6. Offer help. For example: If someone doesn't like getting too close to the fire, ask if they'd like you to roast their hot dogs for them. 
  7. I'm not expected to like everything and that's ok!
  8. Always give your mom a big hug because she deserves it.
  9. Naps are a Godsend! 
  10. Burping is ok as long as you say "Excuse me" immediately afterwards. 
And because he talked so much, I learned how precious my rare moments of silence truly were.

On the second week of camp, just hours before the campers arrived, all the counselors sat around our usual table on the back porch and hashed out who was going to work with which camper. Week 2 was the week of girls; however, they were adults, not in their teens like the boys. Ages ranged from twenty to mid-sixties.

I paired up with another counselor who also had a high functioning camper the first week. We chose to work with a non-verbal camper who needed help with personal care, a completely new set of challenges.

It's always an interesting moment when the gates open and cars start filing in with campers.
There's a lot of anticipation that goes on.
A lot of "What's my camper going to be like?" bouncing around your head.
Because there's only so much text on paper can tell you about a multifaceted human being just like you and me.
What I often thought when things got overwhelming.

And let me tell you, meeting my camper for the first time was definitely daunting because there was so much to her that I didn't feel qualified to handle:
  1. Cerebral palsy, but mobile. 
  2. Non-verbal (Pointed at your hands for yes or no after asked a question). 
  3. About 15 years older than me. 
  4. Needed help with personal care (bathroom, eating, etc.) 
The word "can't" cycled through my thoughts a million times that day. It astounded me that her mom felt comfortable enough leaving her under our care. Our air of confidence must have been really strong that day.

Then it was just the three of us.

Meeting a non-verbal person for the first time is quite unnerving.
Reaching out and learning their ways of communication puts you in a very vulnerable position that not many people like to be in because their is a lot of risk involved. Trial and Error become your two new best friends.

Something I failed at in the beginning was: Too much talking, not enough listening. 

I'd talk too much and immediately feel like a big-fat failure when I didn't get a response from her. Then I'd just go quiet for a while, giving up on the whole talking thing because she couldn't talk back.

I made a huge, disastrous snap judgment that basically boiled down to this: Because she's unlike me I won't be able to connect with her. 

Past Amanda might have responded with: Well, how can I listen if she isn't saying anything? 

*Major Face Palm*

See, the reason this post took me so freaking long to write is because a lot of this is incredibly embarrassing for me to admit, but here's the great thing about all of this: I learned from my mistakes! 

Here's how Camper #2 communicated with us: 

  1. When finished eating she'd drink her beverage. 
  2. If she didn't look well it's probably because she had to go to the bathroom. 
  3. If she smiled and tilted her chin up the answer was most likely yes
  4. If she didn't point to our hands the answer was probably no
Here's what I learned from Camper #2: 
  1. I need to slow down. Go at her pace, not mine. The world is not a race.
  2. See what her abilities are before assuming what her disabilities are. 
  3. Life is too short to feel insecure. 
  4. Be confident. Grab somebody and dance with them! 
  5. Don't take life too seriously. Play pranks on people! 
  6. You can never have too many stickers! 
  7. Always try your hardest no matter what. 
  8. Look at it from their perspective. For example: If I'm eating eggs, I would want my counselor to ask if I want salt, pepper, ketchup, and or hot sauce for it. 
And I also learned how to be more human. When it came to personal care, I wasn't particularly eager. My partner and I traded off on holding the trash bag while the other person wiped. Sometimes poop got on our gloves and obviously that wasn't fun and inside I'd be a huge whiner, thinking: Ewe, ewe, ewe, ewe, I don't want to do this! This is really gross! 

And that's when that memory of Trainee hit me. Suddenly, I remembered how mad I was at her from not looking at the situation from my perspective. Not the most ideal situation for Camper #2 either, so I quickly changed my mindset. 

Favorite memory about Camper #2:  
When she climbed all the way to the top of the rock wall! I mean, she's someone who needs help with day to day things, but she climbed a freaking rock wall, which is no easy feat for even the most able-bodied among us.
It's an education in itself to see the staff patiently work and encourage the campers up the rock wall. They're incredibly inspirational!

Most frustrating moment at Camp: 
One of our campers was kind of violent. Scratch that. Not kind of. She was. One day, during flag, we were all circled up and she grabbed me from the side in order to stabilize herself as she lowered her butt down to the ground. This totally tweaked my back. Like sharp-pains-shooting-down-my-legs kind of tweakage. So, I knelt down beside her and gently said: Hey (Camper's Name), can you please let me know when you want to sit down next time, so that I can get into a better position to help you? See, I have a bad back. I've had two surgeries...
Silence. 
Ok? I asked. 
Then she punched me hard in the arm. 
I shot up to a standing position and said: Ok! And walked away. 

Sometimes it's better to just walk away from certain situations.  

Post Camp Reflections: 
At the end of camp we have to write a post reflection and in this reflection we're asked if we want to help people with varying abilities in the future and if so, how? 

After having gone through this experience I have a clearer idea of what I want to do in life. Many of you know that I am majoring in Psychology at Portland State University and have recently discovered that I specifically love Neuroscience! After working with these campers I'm even more fascinated by how the brain works. My partner became annoyed with me after I repeatedly said: "I want to see a brain scan on that person." So, after surviving these past two weeks, I've realized that as much as I want to help people with varying abilities, I'm not really cut out for stuff like personal care. I mean even my CS said: "There were two kinds of counselors in our group: exemplary and really good. You were really good." And I'm totally ok with that! Because I know I wasn't out of this world amazing like some of the other counselors, but at times when I'd beat myself up about this fact, I had to remind myself that my CS was impressed that this was my first time ever working with people with varying abilities. 

Honestly, I think my talents and passions would be best served in research and working in the lab, figuring out how to better people's lives through science. I'm still testing things out of course. I thought I might want to teach, but after teaching Neuroscience to incoming Freshman this summer I decided that, um, no, teaching is not for me.

Still hoping for a career that involves writing and psychology... 
I'll figure something out. 

Another thing to mention... I sometimes volunteer with the homeless through a program called Night Strike, which involves a lot of people with varying abilities and now, after having gone through this camp I think that I will be able to hold better conversations with the people I meet there and feel more comfortable, which is huge!

In conclusion, while this camp was one of the hardest things I've ever gone through (second to my back surgeries) one of the best things about camp is that I got to look at people I used to classify as other, seek out their humanness, and in doing so discovered my own humanity and for that I am eternally grateful.


Sunny and I dressed to the nines for the dance. 
Me and Se-Ra, always laughing.

Me an Sunny, pondering life. 

Enjoying those negative ions...
Some sage advice in the girls cabin. 

Hiking with my camper: Team Yellow!

We LOVE canoeing!
Setting fish catching records! 29.

My counselor family. 
What about you?
What experience have you gone through that made you more human? 
Would you ever volunteer for Mt. Hood Kiwanis Camp?

Blog to you later! 
Love, 
Manders