Do You Want To Know A Secret?

I took part in a 9 month SEEL program (Spiritual Exercises in Everyday Life). I wasn’t too sure about it at first. It sounded like a good idea but a commitment I doubted I could or would keep up. My roommates had committed to it so I did to, going against my many reservations.

One of the SEEL requirements was to meet with a spiritual director once a week. As much as I’d been interested in spiritual direction and had come close to organizing it on a few occasions, this was the part of the program I was the weariest about. What would I talk about? Would I be comfortable in such a situation? Would I be able to keep the commitment? Would I be forced to keep it up even when I couldn’t? Would I be able to have a director who I didn’t already have a relationship with? The last question was the biggest one for me. It almost kept me from the retreat.

Almost.

Towards the end of the year I sat down with something on my mind that I didn’t know I had even been thinking about. As I often did after I got comfortable with the process and it’s just one of the things that just speaks to how great of a director I had.

I told her about an outing I had with my housemates and how angry it had left me. It wasn’t a huge event, in fact now I don’t even remember what it even was, it was just an activity that had quickly turned into community time, not hard to do with 4 people really. Whatever it was I do remember having fun at whatever it was, so did everyone else. But feelings of anger overrode the fun, especially after the fun was over. Don’t you just love how life works like that?

As I kept talking I started to realize how angry I really was about the whole situation. In fact the outing wasn’t very fun for me at all just stressful. I just pretended to be happy so I wouldn’t be the downer in the group. And true to form I got louder and louder, most people cry during spiritual direction, I get angry and talk through gritted teeth, yes, I did leave her office with a sore jaw on many occasions.

I realized I was angry because I had been living with these people for almost a year, yet I still had to explain to them what needed to happen so I could be part of the fun. I felt that I should have to explain myself to people I was supposed to be so close with after being together for so long. And, I thought, at that point, I didn’t need to anymore. That was a point of my anger, but it certainly didn’t end there

The truth is this wasn’t the first time, nor do I expect it to be the last, for something like this to happen. But there was one very distinct difference about this time.

My best friend wasn’t there.

Now I’m not saying she’s always been there when I’ve been in a tough spot and needed help. We do have our own lives. When I say, she wasn’t there I mean I couldn’t talk to her. Every time I’ve gotten angry about this before I’ve vented to her, immediately after, and she’d provide common sense to my mania. I was mad because no one seemed to care that I was “left behind” in some capacity. I know now, thanks to my director expecting the same results from my housemates, or just one of them was unfair. My best friend has watched (and helped me) adapt to my surroundings for years. So much so that it’s become second nature for her to make adaptations as well. The extra thoughts and explaining doesn’t have to be there. It’s one of the gifts of having begun your friendship at 5 years old. No matter how close I felt to my housemate’s time was not on our side. Expecting less than 12 months of friendship to have the equivalency of a friendship of almost 20 years was more than unfair. Naturally I see that now, given the time to reflect.

During a pause in my rant one sentence blows a hole in my brain. “They don’t get it and they never will.”

As much as I knew this was true I must’ve been in lifelong denial, until that day. Maybe I thought that I could change things, because I’M different. I can make people know things that others can’t. I’M ME.

Can’t I do the impossible?
No.
I’m not God.
I can not do the impossible.
At least not on my own.

I have to take a moment here and say that my spiritual director can speak to my hidden aggravation. She herself has a neurological disorder; she might say condition or even blessing, which people just don’t understand unless they have it themselves.

Once I shut up, with her assistance, she went to work. The grand sum of her wisdom was this,
“Stop trying to get people to understand what they aren’t going to. It’s not within their capabilities to understand anything. They have no idea what it’s like to be you for a day and how much more work it actually is. If they knew they’d be exhausted and wonder how you do it every day. Stop trying to get them to understand, because they just aren’t, and that’s just going to leave you angry, and you have no time for that.”

It wasn’t a long walk home after my session but I certainly did walk a little slower. I was also thankful for the fact that I had to walk home rather than drive. The walk had become so routine that I could get home with big things on my mind and have everything somewhat processed before I walked into the kitchen, depending on the speed I chose to talk of course.

I wouldn’t say that my session was some kind of breakthrough, although it did feel like it at the time, and somewhat heartbreaking as well. The shock and revelation was that someone, other than me, was able to put into words, and tell me, what I’ve felt to some degree for my entire life. Several family and friends will tell you I’ve always been articulate. However there are still lifelong thoughts I am still learning to articulate.
I’m pretty sure without that session I’d still be trying to articulate that particular thought.

Among friends I’ve been known for my boundaries, among other things too, I hope. Among family I’m known for my lack of. This I am more certain about than the previous statement since I get reprimanded for it often. As I’ve gotten older the word “boundaries” is being replaced with “walls” more often.

So, I start to think.
Is there a connection between my “walls” and my desire for people to just “get it?”
YES!

If that wasn’t a self-question to lead myself into denial than I need some help of the mental variety. Being that I was fresh of a spiritual awakening session I did myself a favor and cut the bull, or caught myself before I got too far into it.

I have so many “walls” which I will now refer to as a secret because in the most primitive parts in my brain I know people won’t understand. I keep secrets from everyone, friends, family, coworkers, my parents, even my best friend. Why? Because I know they just won’t get it. I know I won’t be able to stand explaining all the details so I keep most of them to myself. Life can get hard enough as is I don’t need to invite more mental stress into my life, which letting everything out will do.

Everyone feels the need to belong to something somewhere, and often with someone by their side. My reality is I need to make a place for myself to belong rather than put myself into an established group. I don’t belong (strictly speaking) in normal society because I have to deal with more than they do. I don’t belong with people “in my situation” because they do understand (to an extent) what I have to go through on a daily basis. The problem with my being with people “in my situation” (for me personally) is that things quickly become a one up contest. I express a problem. They relate and give it a twist. I try to make things clearer. Their interpretation with a twist follows that. The conversation can continue on like that for days. The problem with the little twists are that more often than not it’s “I have that too, but worse, listen to this….” It leaves me feeling guiltier for not making the best of the situation than feeling like I’ve been helped, supported, and more importantly, listened to.

There was a night in college that will always stick out to me. I had a rough day, for whatever reason, whatever it was it just pushed me over the edge. I’m a bottle it up and then explode kind of girl, in case you haven’t already picked that up. I was lying in bed crying when my roommate came home. Seeing me in obvious distress she dropped her stuff and got on the bed next to me. The end of the conversation came when she told me that maybe if I let people knew how I felt more often I wouldn’t end up feeling like I did at that moment (or any other moment like it before or after this one). I looked at her like she was clueless, because to me, in that moment she couldn’t be more so. “If you only knew…..” I thought. She meant well, and did help me out somewhat, but that didn’t lessen my urge to want to slam my head into the wall so hard that I’d end up in the apartment next to ours.

There have been times that I’ve let people know everything going through my head.
Not one of those people is my friend today. The minute I tell them everything, that they asked to know, I’d like to point out they turn tail and run. I can’t say I blame them but they did ask. You’d think they’d make an effort to hang around for a while. But if people did that divorce rates for people with disabilities or parents of children with disabilities wouldn’t be so high. It really does take a certain kind of person to hang around and they don’t hang around every street corner waiting for some who might need them.

I do try and make small efforts to let people in but the response it never what I thought it would be, even from people who said they’d like to just know what’s going on in my life. Typically, if I get anything in response to my “letting in” its anger or accusations of trying to get people’s attention or pity; in fact, I’ve gotten that so many times that it doesn’t even bother me anymore. If someone feels that way about my honesty than that’s their business not mine, all I have to do is live my life. The other most popular response I get from people is “I’m sorry.” More often than not it’s worse than getting people’s pity, although they have been known to walk hand in hand as well. However, “I’m sorry,” is worse than having to deal with people’s accusations.

What people don’t get is I don’t want “Sorry.” I don’t need “Sorry.” What I really need is your help. That’s what I really want to. If you can’t turn to your friends for help, then who are you supposed to turn to?

I was determined to think of one person who knew everything about me, not including myself of course, by the time I got back to the house. As I got closer I would walk slower and slower. It was taking me longer to think of someone than I thought it would.

There isn’t a single person on the planet who knows everything about me.

To be continued………

*A similar version of this post first appeared on an old blog on October 17, 2008

Owning It

After all my thinking I’ve come to a realization.

I think.

And it wasn’t even a result of all the thinking.

Instead a statement from the oddest of places.

“I can’t believe I get to live in this body”

You could practically hear my brain scream “THAT’S IT.”

I can’t believe I get to live in this body.

Not

I can’t believe I have to live in this body.

Which is pretty common statement when you have CP, because if your body doesn’t always do what you want it to do it’s not always your favorite thing and you resent it every once and a while. It’s a part of poor body image that no one ever considers; your image is poor because your body is often at times, well, poor.

Anyway.

It’s not that I had a poor self-image, other than the teenage years and whose self-image is great at that time anyway, but there were times I wished things were different. Mainly why I wasn’t naturally gifted at most things that interested me. I didn’t want to work as hard as I had to to do anything, which included working out.

I knew what I had to do to maintain function. I’d been told it countless times. I didn’t listen. I didn’t want to. I didn’t care. I wasn’t like all the other people I’d been told about. I was different.

I was in denial.
(Am I saying that I spend 20+ years denying that I have CP? Probably, yeah.)

Then I had my wake up call.

And rolled myself off to fix my mess.

Part one was surgeons.

Part two was all me.

And I thought I knew how it was all going to go.

I may talk a big game but I’m still in the early stages of figuring this all out.

I thought I’d recover from surgery, just like I have from all of my other surgeries, and return to some sort of status quo I’d been living with, and hope I’d have a good chunk of time before I had to repeat the pattern.

Because that’s how CP works.

WRONG.

I felt (and still do) so different with my new hips. I have my good (when I could tell my jeans wouldn’t fit) and bad days (when my jeans didn’t fit) with them. At first it was difficult to adjust to them. My brain recognized the correction but often couldn’t get it together to work with it. Even though it was/can still be frustrating it’s amazing.

I’ve come to a level of acceptance that makes every day fun in some aspect.
”Let’s see if I can do this.”

Some days I do.
Sometimes it takes more work.

It’s O.K.
It’s me.

I’m still in shock that this body is mine.

It’s really cool.

Work with what you have & own it.

Keep raising the bar.

You’ll keep surprising yourself.

*A similar version of this post first appeared on an old blog on February 25, 2011

Let’s Talk About Porn

Having a blog and a podcast is an interesting experience. Granted I didn’t think I’d be podcasting for that long. I thought it would be a sprint rather than a distance event, which this venture has now seemingly turned into.

I wanted to share our latest recording, and for a few reasons (1) it’s an important topic, (2) I didn’t feel the need to write down what I’ve already said, (3) I want your feedback on the topic.

I’ve talked about inspirational porn before but being able to have a mainstream TV show address it in a relatable way opened a door for me to be able to see the topic in a different way.

speechlessabc_fanpodcast_v02

Listen to H-E-R–HERO

How do you feel about inspirational porn?
Where or how do you think started inspirational porn?
Do you think inspiration porn started with Tiny Tim or someone else?
Did it start with the saints or maybe the life of Jesus Christ?
Do you think we’ll ever be able to get rid of inspirational porn altogether?

 

Grad School: The 3nd Fall Semester

I’ve come to realize that I have no idea how engrossed I get in class until I sit down to write about it, without words that can be found in a Catholic encyclopedia.

This semester was up in the air for me up until the first day of classes, at least that’s how I felt about it.

This semester I finished fulfilling my required number of elective credits (I hope). I’d be lying if I didn’t say I still have some apprehension about it. There’s a level of “done but not done” I just haven’t gotten comfortable with.

The semester was fairly light in terms of workload since I was only taking one class, but other than that it was pretty challenging.

It was a small class, which I typically like. However, the make-up made it challenging for me, sometimes in a good way, sometimes not. I’ve gotten used to interacting with the same group of people in so many of my classes it was an adjustment just interacting with different people.

That alone made class hard.

You know how they say sarcasm should never be in an email? It’s kind of like that. If people don’t know you well, like at all.

I spend hours choosing the “right” words, and it turns out the “right words” and the “best words” aren’t always the same thing.

I can’t really tell you if I learned anything related to the topic of the course because most of my focus was on effective online communication (or at least trying to be better at it). I’m sure I learned something, the results will come with time, not unlike a lot of other topics I’ve studied in these last few years.

At the beginning of the semester I wish I could’ve taken more credits but now I can look back and see it as a nice break before heading into a heavy workload.

In all honesty, I’m glad things turned out the way they did, especially now that I don’t have to deal with it anymore, because it made me realize that I had become too comfortable in terms of how I conduct myself as a student.

I also read books that I actually enjoyed, a feat that’s hard to accomplish in graduate school.

Now onto the longest stretch of work I’ve ever had to do, and if I’m lucky at the end of that stretch will be the finish line (oh God please let it be the finish line).

International Day Of Acceptance

When I started gaining attention for being an “adult with special needs” (seriously that’s what I’ve been called, more than one should), I spent time reading other blogs, mainly seeing if there were any common myths out there that needed to be debunked (not many worth debunking, for the record).

I noticed that a few people, mostly CP moms (as in moms who have kids who have CP), would mention something called 3E Love. Curiosity got the best of me so I checked out 3E Love for myself.

I bought my 1st wheelchair heart tee shirt (& sweatpants) at my first Abilities Expo. I LOVE the sweatpants. I wonder how I ever traveled without them.

I bought my dad his first shirt before his first Abilities Expo, and did the same for my cousin (it’s become a tradition I guess).

Several people in my life have 3E Love products; my dad even uses a 3E Love sicker to cover up a ding on his car.

I was able to hear Stevie (also known as Annie’s brother) share the story of 3E Love & speak to him personally a few times.

I never had the opportunity to meet Annie but I have a feeling I would’ve liked her based on what I know about her. Our shared skill of using kitchen tools as accessibility aids notwithstanding, I’m pretty sure she was an awesome person to know.

3E Love & the Wheelchair Heart were created by Annie (also known as Stevie’s sister).

wheelieheart

Stevie & his family started the International Day of Acceptance as a way of remembering Annie.

Join in the movement of acceptance.

IDoA

*A similar version of this post first appeared on an old blog on January 20, 2014

Sarah Leaves

I used to have a fairly regimented holiday season, and then things changed.

Taking the advice of a former coworker, when things changed that I couldn’t control I changed what I could control.

I leave.

As my mother keeps telling people “around the holidays Sarah leaves”.

As in claw around the holidays throw my stuff in a suitcase and hit the road, or sky, whatever fits.

In fact, I happen to be typing this while sitting in the back of an RV which sounds far more romantic than it actually is. Being a nomad, even temporally, isn’t for wimps.

Why do I hit the road? Because left to my own devices the holidays are filled with memories of traditions that lasted for decades.  I get out of my long time comfort zone of traditions by not acknowledging any, if I can help it.

Where do I go? Well that depends, it helps that my family has spread out in the last few years. It’s not nearly as expensive and much more relaxed.

If I can get a reasonably priced ticket and a place to crash I’m gone.

This new tradition of non-tradition helps in some ways but other aspects are more difficult.

There’s always lack of sleep to contend with but at the same time it allows me a better chance to think about other things rather than what’s still lodged in my brain. For example, it’s hard to get lost in grief when you’re trying to catch your next flight located across the terminal that’s scheduled to leave in less than an hour.

I don’t travel as much as I used to and truth be told I find it to be increasingly stressful but I do make these “pilgrimages” every year I’m able to.

I still get criticism from people for it but I don’t care.

My sanity must come first when I feel depleted or else I just spin within myself and it just gets ugly.

I don’t really leave. I retreat and recharge by changing my surroundings. I get out of my own head and in some cases out of my own way.

There’s nothing wrong with wanting to take a break of some kind, before, after, or even during, the holidays. It’s overwhelming and overstimulating for a lot of people, self-included, naturally. However, it’s much more common to criticize those who acknowledge that they need a break. Someday it’ll be the other way around, as it should be.

One Word: 2017

Build. Chance. Providence. Transition.

What comes next?

Endurance

At least that seems to be calling me.

There are a few obvious reasons:

-Attempting to become more of a distance swimmer, because although a 50m doesn’t seem like a lot of work it can be just as hard as swimming a mile. I need the endurance, literally.

-Although I’ve made it through the bulk of my degree program I’m really just getting to the hard stuff. I won’t be pushed out of my comfort zone I’ll be blasted out of it, no matter how much I prepare.

The not so obvious reasons would be:

-Starting a search that would lead to an actual career.

-Basically become better at “adulating,” because I’m (hopefully) going to be an adult for a longer period of time than I was a kid.

-The older I get, even though I’m not that old, the more energy I need to get things done. I’m not just talking about physical energy but mental and emotional energy, probably even more so than the physical aspects.

-Developing endurance will give me the opportunity to have more time to devote to one thing at a time, hopefully.

“Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win.”
-1 Corinthians 9:24

One Word: A Review

“I think this year will be easier to tackle if I just call it what it is from the get go, rather than being in denial for an unspecified period of time.”

When I wrote that last year I truly had no idea what I was getting into, other than I was being secretly overly optimistic.

Transition was my word for 2016.

And boy was it.

All the things I thought might happen did:

-I became one of the “older” students on campus.

-I’m now more an advisor than an advisee.

-My degree program has a new director, who has made me think more about my potential impact for the Church, and in the best way possible (I think, I hope).

-I’ve learned more about myself when it comes to achieving goals.

-I’ve tried to enjoy the steps along the way while keeping the end in mind, rather than let it become my sole focus.

And then some:

-I changed my schedule to better fit the life I want instead of worrying about what other people might say about my motivations.

-I’ve been trying to put school as the priority, which means devoting my mornings to coursework rather than feeling “awake” enough to do it.

-I joined a swim club, and although it’s been something of a culture shock it’s been overwhelmingly positive. There are still times when swimming sucks but that’s bound to happen no matter how ideal the situation is.

-I ventured into podcasting, thinking it would be a one-time thing but it’s becoming an actual venture.

-I’ve actively participated in most of the changes in my life this past year, rather than having the change still occur with resistance on my part.

They Forgot Me On A Train

I do not enjoy train travel and my most recent experience didn’t help matters, which is probably a dead giveaway given the title of this post.

I travel to NYC once a year. People think because I’m so close I do it all the time. 1) It’s not that close and 2) the logistics involved are beyond ridiculous.

I know a lot of wheelchair users who prefer to travel by train, but I’m not one of them.

A few years ago, it was announced that all railcars would soon be fully accessible, meaning no need for bridge plates and worrying about finding a car with a wheelchair space.

Years later not all railcars in use are accessible, and even the accessible cars require the need for bridge plates, which means you need a conductor to get the bridge plate for you.

And therein lies the problem.

I knew I would probably need the bridge plate once getting to my arrival station so I parked myself next to it and informed the conductor. Once the train stopped at my arrival station (also the last stop of the night) I let everyone else disembark ahead of me and waited for the conductor, especially after I saw the size of the gap between the train and the platform I knew I shouldn’t even try to hop over it.

I’m waiting a long time so I see if the bridge plate was left unlocked. It’s happened before, but not this time.

My mother decided to stand in the doorway to prevent it from closing and hopefully flag down a conductor who might be passing by, no luck.

The starts closing and unlike elevator doors they don’t stop when met with resistance.

My mother is standing on the platform and I’m still on the train with no way to open the door.

I don’t see anyone who is still on the train or a phone number, instead I just see an emergency intercom.

My mother is trying to find someone without wondering too far from the train.

I press the button on the intercom & start screaming for help. It’s late, pitch dark, and I have no idea if or when they’ll turn the lights off on the train.

Nothing.

I press the button again & scream.

Nothing.

Again.

Nothing.

At this point I’m panicked and just want the door to open.

I try the intercom again.

Still nothing.

Finally, a conductor walks through the car, doing the final walkthrough, my screams weren’t heard.

He tells me that he told the other conductor, the one my mother saw walk off the train but she couldn’t get his attention, that I would need assistance. He asks if I still need the bridge plate.

(I want to scream again, but this time for an additional reason)

He opens the door, puts the bridge plate over the gap, and wishes me a good night.

My panic has been replaced by fury but because it’s so late at night all offices are closed and I’m forced to just go home.

I go over the whole thing in my head and then again, on the ride home.

There was nothing I could’ve done differently, and that’s what I still find to be the most frustrating.

The world isn’t always a friendly place for people like me.

That’s just not acceptable.

Not to mention worse than being forgotten on a plane.

They Forgot Me On a Plane

Feel free to watch before you continue reading.

My experiences traveling are different than Mike’s although there are enough similarities to relate.

Here’s the thing about traveling with a disability (from my experience), no experience is ever the same; even with something as standard as TS@ procedures.

I have family settling in North Carolina (with Florida being a close 2nd) faster than should probably be allowed. I need to figure out streamlining my air travel to anywhere in North Carolina or else my wallet would continue to be emptied in BWI out of sheer boredom.

There’s also the matter of traveling from point A (my home) to point B (North Carolina) could take anywhere from a 2 hour flight to an 8 hour day (if more than 1 flight & layovers are involved).

I got lucky when I remembered that Charlotte is a hub for a major airline (you can probably guess the airline that shall remain nameless).

At least I thought I was lucky (see: title of this post).

I did everything possible to prepare airline staff of my needs. I told them what I needed & asked questions for further clarification. I got nervous when I boarded the aircraft; due to its size, but sitting by the window helped. I slept the entire flight thinking I was in the clear.

I like to sit towards the back of the aircraft for two reasons, it’s easier on my spine & the ground crew needs time to retrieve my wheelchair, sitting towards the back allows them to do this without agitating me.

As I approached the door of the aircraft to deplane I caught the eye of one of the flight attendants.

“Oh no. We forgot you were onboard. Will you need a ramp?”   

 You what? Will I what?

I look out the door to see a flight of airplane stairs & they’re steep.

I guess that’s what that ‘do not walk behind the wings of the aircraft’ warning was all about. And come to think about it no one asked about whether I’d need assistance upon arrival.

Now I know to bring it up before leaving the departure gate before boarding……

I was tempted to ask the flight attendant just how she thought they’d set up a ramp safely now that half the plane was empty and the other half were waiting, but I held my tongue. I told the person I was traveling with to go in front of me so I would have a better grasp on spatial awareness (by looking at her shoulders instead of the stairs).

I made it down the stairs & I looked for my wheelchair, which was placed (brakes on, to my surprise) in front of the wing, just barely.

While waiting for my luggage to be unloaded I snapped a picture of the plane to send to friends & family, with not so comical commentary, to let them know we had arrived safely. Not long, maybe 3 seconds, after I press send I start getting replies.

“How did you make it down the stairs?”

“Didn’t you tell someone you needed help?”

“What if you couldn’t walk?”

The last question was the one that really got to me. I’m fortunate that I have good enough mobility that I can make do when unexpected situations arise. As unpleasant as being a forgotten passenger was the situation could’ve been worse. I could’ve been stuck on the plane until they got the ramp, however that would’ve happened.

Getting into the terminal was another challenge. I was told, and I’ve also read, beforehand that the Charlotte airport was going though major renovations. I hope this is true, because if things stay as they were the accessibility is pretty terrible.

I hope that eventually, meaning sooner rather than later, that every flight can be given a jet-way that leads straight into the terminal so stairs and/or the need for additional ramps isn’t even a thought.

I’ll probably use the airline & the airport again. It wouldn’t be my first choice. If there is a next time, for whatever reason, I’ll be better prepared. I hope the airline will be as well.

When I’ve retold my experience to others they’re shocked that the flight crew forgot I was on board. It wasn’t the first time it’s happened & it probably won’t be the last. I do my best to express my needs and concerns to who needs to know, and maybe a few who don’t. That’s all I can do. But that doesn’t make it suck any less.

Do you have any interesting travel stories?

*A similar version of this post was written on May 20, 2013