Speechless For Now, Or For Good

I recently wrapped my 1st stint as a podcaster. It was an interesting experience to say the least. It wasn’t something I ever envisioned doing but I didn’t want to turn down the opportunity.  It was a new challenge. And in all honesty, it was one I wasn’t always up for.

Now that the season is over I’m taking time to evaluate whether I want to do another season. If you listen to the season finale episode you’ll hear me joke about whether you’ll hear me on Special Chronicles in the future.

Honestly, I haven’t made any decision either way at this point.

There’s a lot to consider, now that I know what podcasting really involves.

-I have other projects I’d like to work on.
-Do I have the time for everything?
-Do I have the energy for everything?
-Can I produce enough quality content?
-Do I want to produce more content than I’m already producing?
-Do I have anything left to say that someone hasn’t said or can’t say?
-I went into this venture thinking it would be a temporary gig, although it lasted longer than I thought, that doesn’t mean it wasn’t still meant to be temporary.

And that’s just the short list of thoughts.

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When does one truly know when to step back, move on, or carry on?

I guess we’ll all find out the answer in the fall, at least in this case.

Is This Thing On?

My of my biggest worries as a blogger is that I repeat myself. I’ve been at this for long enough now that I know it’s more likely to become a reality, therefore I have tried to be better about organizing my posts.

However, I almost wrote a post today that was going to be almost identical to a post I wrote last year, almost to the day.

Are you creeped out? Because I was, kinda.

I feel like I’ve blogged myself in a complete circle.

I may be on the verge of an existential bogging crisis.

I don’t want to keep reposting previous posts, although sometimes they do have their place, but what else do I have to say?

How much more can I write about Cerebral Palsy & what it’s like to live with it?

My brain can only crank out so much information before I’m just shouting into a void, regardless of what anyone else thinks.

The last time I felt this way I was told it was OK if I repeated myself because people needed to hear it again, but even that can only last so long before I sound like a raving looney tune.

Social networks have been great to me in this year’s undertaking. See a tweet. Have an idea. Write a post. Include tweet in post. Add post to retweeted tweet.

But I don’t feel like that can carry me though the rest of the month, or even through the next week.

I could get ideas from my podcasts but here’s the thing with that: as soon as we stop recording I forget everything I’ve said, which makes doing the show notes interesting (because I have no interest in listening to myself).

I know people are reading, sharing, and commenting.

Is there anything you’d like me to say, or try to say, that I haven’t already said?

I’m hesitant to promise an “ask me anything” type post but I’d be willing to give it a shot if people are open to hearing what I have to say (or not hearing anything if I deem something off limits, but I’ll disclose that).

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.

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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?

 

Tip Tuesday

Although I spend a fair amount of time engaged in some fashion in social media I have mastered none of it. In fact, I find it frustrating, meaning social media itself, not the mastery itself.

I have no expertise in it whatsoever.

Instead I find people who are and pick their brains to no end.

I’ve realized I can make better use of my time (and my sanity) if I don’t try to become an expert in everything.

(I may have studied a little too much Plato in college, but it makes this make sense)

A few years ago, I attended the Catholic New Media Conference. I’d like to tell you I did it on purpose but I just got lucky. It was small, reasonably priced, and easy to travel to. I had reached a point where I needed to learn more before I got buried in the noise of the internet.

I was so overwhelmed after one day, but I knew I was in the right place for the right reason, and I knew I wasn’t done learning from this pool of talent.

I went home and did my research, and then I kept tabs on the people that gave talks, the people I remembered seeing, even the people who started following me on Tw!tter for no reason in particular.

At the most recent CNMC I came prepared. I made two mental lists the “need to” and the “want to” list.

Patrick Padley was on the “need to” list. After sending an unknown amount of emails to companies I thought would be a good match for increasing CP awareness and getting no response. I knew I wanted to pick his brain to know what I could do differently, what I could do better.

Maria Johnson was also on the “need to” list. I needed to thank her personally for her help and inspiration. She made my brain light up like a pinball machine at my first CNMC and the lights haven’t dimmed much since.

Lisa Hendy was on the “need to” and “want to” list, for reasons that are too long to list. Let’s just say if you want to see what can happen with a small venture see Catholic Mom

And lest I forget Greg Willits who ended up at the top of my “want to” list after delivering his keynote. You know how there are people that can tell you things you don’t want to hear but when you hear it it doesn’t seem that bad? I never thought I’d thank someone for telling me things I didn’t want to hear.

Basically, my advice for using social media for advocacy is this, do what you’re good at (hopefully it’s something you like too). Seek out the advice of people who are experts in the areas in which you fall short.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

The Week In Review

The last few weeks have been rough for me on nearly all fronts. I won’t go into the details because recounting all of it would just be too exhausting. Let’s just say I could relate a whole lot to a recent recording of Adventures in Imperfect Living.

I either haven’t been able to get anything done or I haven’t wanted to. What I have could get done is my part and now I’m waiting on someone else. I’ve been in a hole and by the time I realized it I was already buried to my shoulders.

The one thing I could count on to attempt to get out of this funk has been swimming.

Are you surprised at all?

Although I must confess my enthusiasm for the sport has waned in the past few months, which should give you a clue as to how buried within myself I was.

I began to make a few small changes.

Things I could control, without question.

I got into the pool and followed that black line up and down, and back again.

I took what I could control one step further and tried what I wanted to do, what I thought I could do.

It’s been fun, even if it hasn’t always worked.

I admit that staring at a black line for extended periods of time sounds boring but I’ve found empowerment in it. I always have. These past few weeks have just proven that for me.

I don’t have to think about what I must do. Often I can’t. I’m occupied with my stroke count or looking at the line at the bottom of the pool.

Or I’m not think at all.

It’s easy to get lost in your own rhythm, literally.

It’s as simple or as complicated as you make it.

Just as people wish life would be.

Digging yourself out of a hole doesn’t make for a good week, at least for me it doesn’t, but having something to look forward to makes the days a little easier to work through.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

World CP Day

Every year I struggle when World CP Day comes along, but to be clear I have no problem with World CP Day in terms of playing a big part in the achievement of a goal. I want more people to know about Cerebral Palsy so being against World CP Day would be counterproductive.

I do find it to be counterproductive, not to mention confusing, that World CP is in the fall and Cerebral Palsy Awareness Month is in March. The CP community needs more community, having a “CP Day” & “CP Month” feels like being forced to choose between friends (or overkill having to commemorate both).

So what is one to do?

Jump on every awareness bandwagon that comes by, at least for now.

So what do I write when I’m hesitant to write?

A lot of CP Vloggers have done a “CP Tag.” Starting a Vlog or even just a few videos was something I was considering. But when you consider my limited track record with videos is roughly 1 hour of recording for 1 minute of usable footage any recording just isn’t in the cards right now, which may seem contradictory given my most recent venture. So you’re just going to have to settle for the written version.

CP Tag
Tag Questions

1) What kind of CP do you have?
I have Spastic Diplegia Cerebral Palsy, which means my CP effects my lower limbs, aka legs.

2) How did you get CP?
I’m not exactly sure; I don’t know if anyone could be, because if we knew the cause wouldn’t there be a cure? I was born prematurely (32 weeks) so there’s a good chance that that played a role.

3) How did you feel about a growing up?
Truthfully I can’t remember. Does that make me old? I knew I was different from everyone else growing up, but the words “Cerebral Palsy” were rarely mentioned. There were times when I didn’t like it and there were times when I didn’t mind it at all, usually it revolved around what class I was being pulled out of for in-school PT and/or OT. My parents (and the rest of my family) tried to keep my life as normal as possible so I wasn’t given much of a chance to feel anything other than normal.

4) How has CP impacted your life (good and bad)?
I can’t really answer this question since I have nothing to compare to on a personal level.

However, CP impacted my life negatively because I was teased endlessly throughout school, particularly middle school. What I didn’t realize then, but I now do, is that I was the easiest to pick on because I was the one who was “most different.” I was perceived to be the “weakest” of the herd, therefore the easiest target. It sucked, but I’ve tried to put that behind me, and what I haven’t I’ve tried to use for positive purposes.

CP has impacted my life for the good because I’ve been given opportunities I wouldn’t have if I didn’t have CP. I wouldn’t have the same career, and certainly not the same vocation.

5) Do you ever think about your life without Cerebral Palsy?
I do, but not in the way people might think. When I find myself in certain situations, like after giving a talk or attending a conference, I catch myself thinking, I wouldn’t be here if I didn’t have Cerebral Palsy, so that’s pretty cool.

6) How was schooling with Cerebral Palsy?
I’ve had horrible and amazing experiences in terms of schooling with Cerebral Palsy, bullying aside. I was in a special education classroom in pre-school (ages 3-4) and then moved to mainstream classrooms (with an aide) for elementary school. I ditched the aide around 1st or 2nd grade (I told her to get lost). I was in public school until 5th grade. I was in private (Catholic) school from 5th-8th grade and received no services or accommodations during that time.

I attended public high school with no additional services or accommodations, other than gym class, because the school is so small; in fact, I often ignored what the administration put in place for me and did my own thing with no objections (and the accommodation for gym was more for my safety related to size rather than ability.

I attended 1 year of public university with one accommodation (a room on a lower floor), which was a big fail, but none of that was on my part what so ever. My last 3 years were spent at a private university with the same housing accommodation and accommodations for note taking. I didn’t think I needed any accommodations at all but thanks to a great relationship with the staff at the Disability Student Services offices I was willing to give their suggestions a try and my college experience was so much better for it.

Now I attend a private post-grad institution through an online program (although I am required to be on campus for part of the summer). I have no accommodations and I don’t foresee needing any in the future (but you never know). Thankfully the school is incredibly small so the community is incredibly accessible and supportive when/if needed by anyone.

7) How has your disability changed throughout your life?
Cerebral Palsy itself does not change over time (or so the people with medical degrees say). However, it does change how it affects your life, at least from my experience.

People with CP tend to age more quickly than our able-bodied counterparts since our muscles work harder (I’ve heard somewhere around 3-5 times harder). We’re also more likely to develop arthritis or osteopenia.

I’ve had less surgery as an adult than I did as a kid but I think that’s mainly because there aren’t a lot of studies on the effectiveness of surgery on older individuals with CP. Also a lot of the surgery I had as a kid was to help direct or redirect the growth process. Let’s not forget that medicine/science has developed a lot in my lifetime so that also plays a role I’m sure.

I can’t exactly say when things changed, nor can I explain how each time. But I can tell you that (for me) when some things get worse other things get better. It doesn’t make any sense but that’s just how things are for me.

8) How will things change for people with disabilities?
I can answer this in two ways, the way I’d like things to change or the way I think things are going.

I think things are changing for people with disabilities, obviously, but I wonder if things are going in a positive (or “right”) direction. The disability community is getting more exposure and being included in mainstream society. There’s rarely a day that goes by that I don’t see an able-bodied person sharing a disability related news item on social media. It’s exposure but is it always good exposure?

For example, the “in disability” right now seems to be Down’s syndrome (particularly during Fashion Week) but every article about someone with DS seems to have the same tone. They’re “beautiful,” “always smiling” and have a “bubbly personality,” but not much else.

What does that say to other people, in particular children, with other disabilities? That they’re not beautiful enough? Or that their personalities aren’t as “bubbly” so people won’t give them the time of day?

Cerebral Palsy isn’t much different when it comes to getting media attention. We all seem to “suffer,” “overcome obstacles.” We sometimes are classified as having a “disease,” which couldn’t be more wrong.

All stories attempt to highlight individuals, however so many of them say nearly the same thing.

Yes, things are changing for people with disabilities and a lot of the change is positive but I fear that much of it is venturing into “inspirational porn” territory and that isn’t the kind of change the disability community is looking for, at least I’m not.

9) Do you believe in God? Does that help you deal with having CP?
Yes I do. I wouldn’t say my belief in God helps me deal with having CP directly, but it does play a role in how I live and see my life (much like having CP does)

10) If there was a pill or cure for CP would you take it?
No.

*A similar version of this post was written on October 7, 2015

Cupcakes, Old Podcasts & Touching Reliquaries

I’ve picked up an awful new addiction during this semester, listening to podcasts, well the listening to podcasts part goes back to after my 1st CNMC but I’ve acquired the habit of listening to podcasts that I no longer in production.

I’ve listened to every episode of The SaintCast & In Between Sundays, some more than once.

I’ve listened to so many podcasts in the last few months that the audio jack, where I plug in a headset, on my computer has ceased to function.

Anyway….

I heard that the body of St. Maria Goretti would be touring the U.S. & wondered if there would be a stop close to me, I wasn’t holding my breath but I knew I’d probably wish I had made the effort if there was the slimmest chance.

If I’ve totally lost you go listen to SaintCast episode 15 and come back later.

I emailed my cousin to see if he’d be interested in going with me.

“How can we NOT go?”

He was right; it was so close, relatively speaking, that we couldn’t not go. I’m not the biggest fan of dead bodies, but how many chances does a person get to see a real saint?

I made the decision to take my wheelchair because I didn’t want to think about standing in a long line (even though I knew full well I’d be playing right into the misconception that people with disabilities have a greater need for prayer and feel more akin to the Communion of Saints). Plus my cousin has 6 kids and I wanted to give him some “off time” from having to keep tabs on another person.

It ended up not being as busy as I thought it would be, but then again we were going in the middle of the week, and in the middle of the day.

We found a parking spot quickly and headed inside, through the handicapped entrance so I joked that we’d probably get to skip the line because we were using a different entrance than most people.

It’s a running joke in the family that going out with me means that occasionally you get surprise privileges, easier parking, and better seating at sporting events, no lines at Disney; although not everyone has had the joy of experiencing it firsthand.

I’m happy (and somewhat sad) to say this was one of those times.

We went in and surveyed the situation. I thought about going to the back of the line but I noticed a priest assisting people off to the side of the main line, and closer to the door.

“Let’s just go up to him. We can probably jump the line” Yes, I do realize how awful that makes me.

We were told to wait until the person in front of us was finished and then we’d be escorted to the reliquary.

I thought an escort was a little much since I wasn’t going to be getting out of my chair. But there are plenty of other times when I wished I had such a privilege so I took it.

We were taken to the front, and I made space for my cousin to be next to me. On the other side of me I hear, “Would you like to touch the reliquary?”

It then occurs to me that this is the closest I’ve ever been to a dead body EVER, so I guess it’s a good thing that the first time was for a saint, there was no way I was going to touch it. I’ve touched one casket in my entire life and that was good enough for me. I might’ve felt differently if there had been some prompting by the Holy Spirit but I think it/he/she knew this was a big day for several reasons & I can only take so many breakthroughs in one day before breaking down.

“Nope. I’m good thanks.”

Yeah, I told a priest “Nope,” cause I’m full of politeness and class and all that.

After spending some time in front of the reliquary we parked ourselves in a nearby pew for some prayer, and if you’re me, people-watching-after-prayer.

I had been to this particular parish before, but I couldn’t remember when, or why. My cousin says we’ve both been there before, and together, so my guess is I was pretty young and passed to a bigger cousin or two.

After some prayer time we discussed whether we wanted to stay longer or leave. The conversation went something like this:

“Do you want to stay longer or are you finished?”

“Whatever you want to do, but if we go now we can get a cupcake.”

“Let’s go get cupcakes.”

There’s a reason why Catholics are referred to as practicing Catholics and not perfect Catholics, and even if that was a thing we’d both fail pretty miserably. And it’s pretty obvious that even though we’re technically both adults, we’re actually overgrown children.

I should also be noted that this is one of only a handful of times that my cousin and I have had one on one time. We both agreed that we had the best time and we should do stuff like this again (Are there any more saints touring the US anytime soon?).

An Obligatory Advent Post

Recently I asked my dear friend Tiffany if she had any ideas for blog topics. With Advent around the corner she suggested “Advent prep?” Which I quickly replied, “I have that covered.”

Well the joke’s on me, because I don’t. I mean I did, but if you were to go back and read what I’ve posted on a previous blog during previous years, well, it just doesn’t work anymore.

Add in the facts that the semester is almost over and I can’t stand the Christmas season starting before Halloween and I’m at “Christmas burnout” around the 1st week of November.

I put up with it, begrudgingly, but I certainly don’t like it and make every attempt to avoid anything out of my comfort zone.

Yes, I’m the person who says “No thanks” to office Secret Santa projects and grab bags because I can’t pull it together to buy a gift for someone else, not even with the benefit of online shopping.

I’m the person who says they may attend the work Christmas party and then back out, sometimes at the last minute.

I can’t deal with any of it; I don’t even want to try to.

I’m more of an introvert by nature, but the holidays make me want to crawl into a hole and never come out.

That being said I will tell you that I like the time of Advent, not as much as I like the Christmas Octave, but still. I like the idea behind it and I wish more people took it more seriously, yes even non-Christians, even just for the sake of Christians.

We all complain that the world is moving too fast, yet we buy into it.

If you want the world to slow down, slow down your world.

Maybe others will catch on.

I hope things reach a tipping point and we won’t be watching White Christmas while waiting for tick-or-treaters.

PS. If you’re looking for a good talk about Advent Greg & Jennifer Willits recorded one of their talks as a “podcast extra.”

 

Grad School: The Second Summer

This was my 2nd summer as a grad student.

I was looking forward to this summer because last summer was so amazing. I’ve never been a school person but the idea of spending 3 weeks immersed in school was so exciting. I wished there was a fourth week.

By the time I actually started the third week I was more than ready to go home (it was my 3rd locale in a week, who could blame me).

Truthfully I had a minor meltdown when I got to my room and realized how quiet it was. My brain just couldn’t take it, CNMC just shoved my brain into overdrive and it stayed there, I guess. I begged friends to stop by for a quick visit but they were too entrenched in coursework (as I should have been) to oblige.

Have you ever seen an introvert in desperate need of alone time when they finally get it? It’s not always pretty. I think I spent 10 minutes trying to decide what to put in the bathroom and what to leave on the dresser (and trying not to cry about it).

I also missed the blessing dinner for the graduates. This year it was a lunch which I just couldn’t fit in with my over packed schedule. The blessing of the graduates was a highlight for me last year so I was disappointed to be missing it this year. I also have a lot of friends graduating this year so I wanted to say good-bye to them. Luckily I ran into the ones leaving the next day later that night so I got my wish, just not in the way I pictured it.

I knew the 2nd week of classes was going to be the most challenging. Not only was I taking 2 classes but I was registered to fulfill the 2nd part of my formation requirements for the year.

It basically boiled down to 12+ hour days Monday & Tuesday. I wasn’t running on steam before the week was half over, but let me just take a second to publically thank God for great friends and equally great study groups.

I was feeling better about Wednesday. I think because the first two days were so packed and stressful I just let things go. I did what I could the best I could and left it at that. I didn’t worry about not getting to read Humanae vitae or whatever. If I needed to read it, I’d get around to it.

Also after living through my 1st ever tornado warning, complete with sirens and please take cover in the hall, my nerves needed a break.

Funny story behind my history with Humanae vitae, I’ve read it twice previously for fun none the less but I couldn’t remember a single thing about its contents. (Please tell me you find that funny, and not incredibly sad.)

I was also down a highlighter and a pen in spite of bringing more supplies with me this year. I’m thinking this might just become par for the course during the summer.

Wednesday night I ventured downtown with a small group of friends for Symphony Night in the park. Who wouldn’t want to be able to say they’ve heard the Chicago Symphony live, and for free?

I was feeling much better about Thursday and Friday because it meant I had survived the roughest part school wise. At the same time I was getting closer to having to say good-bye to more friends.

One of my classes many graduating friends in it, more than I realized actually, in fact when we were heading to class the first day one said, “oh we’re in the big room.” Not only were we in the biggest classroom available but we filled to maximum capacity, at least comfort wise.

I knew most people don’t stick around for the 3rd week but I was hoping to be surprised, in a good way, by the number of people who did. In the end I think 5 distance learners, my self-included, stayed for the 3rd week (one of whom I never saw so I have no idea if she was even there).

A group of us went out Friday night for one last gathering before departures began first thing the next morning. It was a wonderful time of relaxation and fellowship, and I discovered I do in fact like Thai food and it does like me (although I’m not sure it would ever be my 1st choice).

Basically week two ended with a lot of good-byes followed by self-imposed seclusion over the weekend. Not only was I tired but I needed to take the time to allow a new reality to set in. I was basically alone on campus for two days. It gave me time to reflect, which I needed in order to fulfill my retreat requirement, but it was also very lonely.

I greeted week three with guarded optimism. I was looking forward to class because I’d wanted to learn from this particular professor since I heard him speak at a conference 2 years before. (And people claim I can’t be a patient person?) But I was preparing to spend much of my free time living as a hermit (and finishing Burn N0tice), which I basically did.

The environment of week 3 was so different compared to the first two weeks it took some time to acclimate to; although I’m not sure I can say I ever fully adjusted to it. There was much less socialization between students so I spent time with the girls in the recruitment since we share some important interests.

Halfway through the week I had had my fill of the same theologians and then I realized my classes had some overlapping qualities. You’d think this would be a good thing, but when you’re not 100% of anything you’re learning it can create some worry.

I joked, although not really, that I was going to end up writing my papers all wrong, or I was going to come up with some brilliant insights that were going to change the study of Theology as we know it.

I’m not sure where I ended up with that one; maybe a little of both?

I can hope, right?

Week 3 ended with another good-bye dinner, which I coordinated. Thus making it my 3rd good-bye dinner in 3 weeks (too much, way too much) but I’m glad I got the chance to have time with such good friends, no matter how exhausted I had become.

With that my summer classes ended, but as someone said (and I happen to agree) the work was just beginning.