Telling The Story You Have Ownership Of

During my Q&A in my capstone presentation I was given a piece of feedback that is still sticking to me, like flypaper.

“It would be nice if you incorporated more stories in your website like the ones you just shared with us.”

This wasn’t the 1st time this was suggested to me, so I responded appropriately (or what I felt was) inside I was like this:

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I understand stories need to be told but if they don’t belong to you, you have little, if no right, to tell them.

Although I read it all the time, it makes me uncomfortable when stories are told about someone, a child, sibling, spouse, etc is being told without their consent. I wonder what they would think if they knew?

Mostly I wonder what a child will think about their parent telling everyone about their lives before they ever knew what they were doing.

I understand that stories need to be told, I won’t be a writer if I didn’t, but where’s the line?

I feel like anyone with a keyboard can call themselves a writer these days.

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It sounds great, but what’s the real price tag?

At what point does sharing information become exploitation?

There’s an argument that true journalism is dead. I wonder if blogging has contributed to this. These days it seems like everyone has an agenda, meaning impartiality is gone.

I’m not saying that we shouldn’t tell stories. What I’m saying is that you should tell your story, especially when it comes to blogging. A child, for example, is under your care but when they grow up they’ll have to handle what you’ve said about them, because if it’s on the internet it’s quite possible that it won’t go away.

Tell the stories that you have full ownership of, yours.

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Is Blogging Dead?

I started blogging when it wasn’t a popular thing to do. I didn’t really read other blogs, if I did it was because another blogger left a comment on my blog first. It wasn’t until I was out late one night for a cast party when the director confessed that he often spent hours every night reading random blogs, literally random, he rarely read the same blog twice.

It was only a few years later that my bookmarks were full of blogs, which I checked before starting my day, every day. At times it took up so much time that I was almost late to class on multiple occasions.

At some point I stopped reading my laundry list of blogs and moved on. I’m not sure why but it’s how it happened.

However, I knew the power of blogging. So much so that I compiled a list of blogs that were similar to mine in one aspect. Mainly because I wanted other people to be able to find what I wanted to see for years.

Every once and a while I’d check in on a blog or two that I used to visit daily (or even multiple times a day if called for) to catch up on what’s been going on with that individual, or their child, or their family, or some mixture of any of it.

Some have disappeared. Some of their authors and/or their children have even died.

Some haven’t been updated. Some are still around, a few are even thriving, but it’s not the same as it was.

I suppose it’s a good thing, but I wonder what the downsides are.

These days it’s rare that I read any blog on a regular basis.

These days I grab my phone, 99% of the time before I’ve even gotten out of bed and scroll through social media platforms. I scroll so fast I doubt I’m actually reading anything, unless osmosis is indeed possible.

Some of my blogging friends have turned to Inst@gram I feel like that’s become the new blogging in some ways. I miss the blog posts, but I appreciate that Inst@gam is probably a better fit for their lives these days.

One of my biggest issues with social networking platforms is that I can’t compile a list of people in similar life circumstances that I can with blogs, even if I make a list it’s hard to let others know about it in the same way you can with blogs.

It’s difficult to foster the same type of environment on social media platforms as you can with blogs and the opposite is true as well.

And given how the internet & other technologies have evolved over the years I keep coming back to one question:

Is blogging dead?

My first instinct is to say yes. But upon deeper reflection I’m more inclined to say that it’s just not how it was. It’s just evolved.

Why I: Don’t Suggest Giving Up Social Media For Lent

There are certain things I can count on as Lent approaches. Without a doubt, “What are you giving up for Lent?” is the most popular question to ask and/or be asked.

Now that social media has become such an important part of our lives it’s natural to consider whether or not to give it up for 40 days. I have several friends who engage in this practice, problem is most of them don’t use social media that much anyway. So is it really that sacrificial or are they really getting any benefit from it?

A point worth considering, but not the one I wanted to make right now.

As I write this there’s a snowstorm outside (I’m a write ahead & schedule blogging type). In fact at one point it was snowing so hard that it was snowing sideways. Thus my plans for the day have been canceled and I’m attempting to stay occupied indoors. In a way it’s going to make the point of this post much more poignant, at least I hope so.

The internet, and social media, has opened up everyone’s world. What I don’t think a lot of people realize is just how much it’s opened up the world for those with disabilities.

I wouldn’t be friends with many people if it weren’t for the internet, or at least I wouldn’t be as good of friends with people if things didn’t start on the internet. Let’s just say as an introvert with a disability it’s nice to get the “getting to know you” stuff out of the way when you only get to see people in person a few times in your entire life.

I can’t forget to mention Sara. If there’s anyone who taught me that just because you have physical limits doesn’t mean you can’t create solid friendships and an intentional community. Our friendship may have been short but it left me forever changed.

I don’t suggest giving up social media for Lent for one quasi-simple reason:

You may be part of someone’s community, and it may be the only community they have access to (especially in the winter months).

Giving up your social media routine for 40 days may seem like a good idea and in some ways it can be beneficial but if you do consider who you’ll be leaving behind for 40 days.

Here are some thoughts to consider:

How much can happen in 40 days?

Also consider your group of friends, do they also give something(s) up for Lent?

Do you all give up the same thing for Lent? If so, do you still have that same sense of community because you have other ways of keeping in contact or are you able to see each other in person?

Do you have one friend (or maybe more) that seems uncomfortable with your plan for a 40 day social media fast?

Have you ever stopped and really considered why someone is resistant to give up social media (especially if you “only” know them virtually)?

Lenten sacrifices are meant to make you a better person, but not at the expense of other people. If your sacrifice is harmful to someone else than are you really working towards a greater communion with the Body of Christ?

Alternatives to consider:

Cut back on your social media practices. Check in once a day or once a week.

Post the same thing on all of your social media accounts (idea borrowed from Pat Padley FYI).

Keep community connected through email or text, or an old fashioned phone call.

Make your intentions known early on, as in before today, so if any of your friends have reservations or objections you can engage in thoughtful conversation.

Have a way to contact you on your social media profiles and make it easy to find. Have you ever received an “out of office reply” with a contact email or number included? Like that.

I’m not saying that you absolutely shouldn’t give up social media for Lent.

I’m not God, Jesus, or the Holy Spirit so I can’t say such things with absolute conviction. But I wish people wouldn’t make the decision as easily as they seem to. Virtual community isn’t the same as in person community but it’s still a community that needs nurturing, attention, and people to take part in it.

*A similar version of this post first appeared on an old blog on February 10, 2016

When Liturgical & Secular Collide

Last year (in particular) I had to juggle multiple schedules. The concept isn’t a foreign one, everyone does it every day, at least in the majority.

Although I doubt a liturgical calendar is one people rarely consult, unless they’re Catholic.

However, it’s one I had to basically live by, not counting the fact that the Church also lives by it.

There’s a certain amount of freedom that comes with not having to worry about commitments tied to a calendar (and then having them be graded) and I’d be lying if I didn’t say I was enjoying it, especially when the following post started appearing on social media:

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For those of you not familiar with Lent things can get complicated when the liturgical period overlaps with secular holidays, and even birthdays.

My birthday fell during Lent during college, my 21st birthday no less, my roommates planned a party for me (due in part because I was the only 1 of the 4 of us who had a birthday during the school year). It seemed like it was going to be a huge party, at least in terms of what I can handle for a big event, but it was during Lent.

Lent is a time when people tend to give something up (or do something enriching) for 40 days. My friends gave up drinking or sugar and/or took up a stricter practice of personal prayer, so the party ended up being more like an open house for all our friends. Whoever wanted to stop by did, and I took calls from friends apologizing for not coming by, but it was Lent, and they made a commitment.

I understood, some of them I envied in fact.

Why envy? Because some were making and keeping commitments I knew (and know) I wouldn’t be able to keep (even all these years later).

There’s often talk, and concern of what Catholics should consider a higher priority, the Catholic world or the secular world. I understand it and don’t at the same time. It’s an issue of balance, and that looks different for each person, not to mention personal values and priorities.

I, personally, like to see what happens when Liturgical and Secular collide. I like to see what others do, or not. It’s fun for me, albeit in a weird way, and it helps me figure out my own feelings, priorities, and whatnot.

Learning To Repeat

My hand touches the wall for what feels like the 100th time. This time I got it right.

Then I hear a voice behind me, telling me what I’ve done wrong, well more specifically, what I could have done better.

I’m disappointed, but only for a second or two, because this is why I’m here.

Doing something once is easy, repeating it is the hard part, I remind myself. It’s a piece of advice I was given when I was relearning to walk but it applies here too.

To the untrained eye a swim practice looks like chaos, (and/or completely boring) even though everyone is following a line that runs the length of the pool countless times. It’s for this reason that people think swimming, or more specifically swimmers are insane.

“The definition of insanity is doing the same thing over and over and expecting different results.”

Here’s the thing, the majority of that definition doesn’t apply to swimmers, except maybe the insane part, but that’s not an all the time thing.

People think we’re doing the same thing, over and over expecting the same result.

In reality we’re making (probably small, seemingly unnoticeable) changes to achieve different results.

Then we have to repeat the process.

The hardest part, the repeat.

I’ve done this before, but never swimming, at least not in this way.

Is it frustrating? Yes.

Is it what I want to do? No.

I wish I had a brain that could compute things once and have my body follow, but I don’t have that kind of brain. Not only is it not part of my package, it’s not part of anyone’s package. But that’s not much comfort when your lungs are screaming for air, your muscles are burning, and you still managed to come up short in some way.

I’ve been here before. These feelings are not new. Oddly enough there is some comfort in this, as weird as it seems.

I’m not learning how to deal with new feelings in new situations. That’s a big plus, that my mental energy is pulled in one less direction.

It wasn’t that long ago that I was wondering if I’d ever feel “normal” like I was truly part of a group of people. So, in a way I’m happy to be frustrated because someone noticed that I could be better and wanted to help.

Learning to repeat isn’t easy and it’s not always fun, but when you finally achieve it it’s almost always worth it.

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically, this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

fr-jack-greeting-card

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on September 28, 2016

Email Chains & Religion Humor

The days of email forwards are pretty far gone at this point, but there’s one I still quote on a regular basis. Not because it’s profound but because it’s really funny, it’s probably not entirely appropriate but I still like it. I was wishing I still had a copy of this very email and lo and behold I do (one of the benefits of being a long time blogger is that there’s a good chance you’ve published something, at least similar, somewhere).

– We like to keep Mass interesting. We sit, stand and kneel, in no particular order. Probably just to keep the blood flowing.

– It’s not merlot and Ritz they’re serving; it’s the Flesh and Blood of Jesus. No, really.

– Forget a big meal afterwards, just pick up some of the breakfast tacos they’re always selling after Mass

– Purgatory.

– We all have 20 cousins. On each side of the family.

– Infant Baptism isn’t dumb; it’s after-life insurance.

– $5.00 in the collection basket is the epitome of generosity. Anything more than that, someone has just hit the lottery.

– A missal is a book, not a weapon. However, it has been known to pull double duty.

– The signs we make aren’t just a mark of respect, they’re a lot of fun to do.

– Every Catholic Guy tries to sit next the really hot girl they like at Mass. This is because they really want to hug during “Peace Be With You” and hold hands for the “Our Father”

– We really like statues. A lot.

– After every confession, everyone hits themselves on the head. This is because they have realized that they forgot that really big sin, and they know that it’ll hang over their head til the next time.

– Contraceptives? Why?

– The 14 Stations has nothing to do with TV.

– “Peace Be With You” is just a way to meet pretty girls.

– We’ve always been taught that celibacy til marriage is the only way to go, forever and ever, amen. That being said…

– “Sin on Saturday. Pray on Sunday. Confess on Monday”.

– The Virgin Mary is not a God and we don’t treat her as such. But she is without sin, gave birth to Jesus and did it without having sex. That warrants more than a little respect.

– We actually get all the jokes in Dogma.

– There are two very different, irreconcilable factions in every single church in the world. They are known as the Saturday or Sunday Mass bunch.

– St. Patrick drove all the snakes out of Ireland. SNAKES.

– Bake Sales are a way of life.

– Priests have been giving us alcohol since we were little kids. No wonder any one of us can drink Protestants under the table.

– Mass is nearly unchanged after almost 2000 years. We’re a little stubborn.

– Catholic School Girls.

– The Catholic Our Father is different. And longer. And better.

– We all know Da Vinci code is bogus and inaccurate. Yet we’ll still read it if nothing else is goin on.

– We have Midnight Mass so there are no interruptions on Christmas morning

– There’s no way to explain it, but Catholic girls are just scorching hot.

– There’s no need for impromptu prayer; you can always fall back on the Rosary

– It’s not uncommon for just one family to take up an entire pew or two.

– Boondock Saints is the greatest movie ever. E-Ver.
– Confession. Enough said.

– When in doubt, say a Hail Mary.

– Who created Family Guy? Oh yeah, a Catholic!

– Whenever anyone in Star Wars saga says “May the Force Be With You”, we get the urge to say “And Also With You”

– The Pope does indeed wear a funny hat. But it’s way more interesting than Joel Osteen’s suit and tie.

– We’re the oldest Christian religion. Period.

If you appreciated, chuckled or even smiled at some of these, you’re not a wacko. You’re just probably a member of the one of the oldest and largest religions in the world. Open to all Catholics around the world.

*A similar version of this post was published on July 17, 2007

The Matter Of Privacy

Disclosure is a common topic for people with disabilities, so much so that I took a shot at giving my point of view on the subject. But there’s another subject that doesn’t get the attention it deserves. So much so that it’s taken me months of looking at a tweet to formulate some sort of thought process.

 

Privacy is an odd thing when you have a disability, practically one like Cerebral Palsy that can have more variations than can fit into a textbook.

People want to talk to you, and ask you all kinds of questions. Questions they wouldn’t think of asking anyone else in the same manner.

People want to see you, in some state of undressed, yet still somehow dressed. But no one would ever expect you to go out in public like that, and if you did there’d be a problem or two, or twelve.

I won’t say privacy goes right out the window, but it does have a drastically different definition, especially if you have any understanding of HIPAA.

Being an advocate means giving up more of that privacy for the sake of others who don’t want to or don’t feel comfortable doing so.

I understand that people don’t like to discuss certain topics. I’m no exception to that statement, but I do discuss most of those certain topics because there are numerous stigmas that need to end, particularly around more personal issues, like health, relationships, sex, romance, healthcare (to name some examples).

It shouldn’t be anyone’s business when I started puberty, again another example, but it’s not something that’s generally discussed in the CP community, unless it’s related to skeletal maturity, but even then, the relation to skeletal maturity is left out of the conversation more than it’s included.

I know people want to know things, they have questions. I know because I had them too, I still have questions in some cases.

Privacy is a weird subject when you have Cerebral Palsy because so much of it is stripped from you at a young age, sometimes you’re so young you have no idea that you have a choice when it comes to what you want to be private and what you’re willing to share.

There’s also the matter of topics just not being discussed, like those I’ve mentioned, because of the stigmas of having a disability. We’re human, and not human at the same time. So, there are topics that you don’t feel like you can talk about, or even research without raising suspicion.

I sacrifice my personal right to privacy in the hopes that it helps others, and that maybe someday, sooner rather than later, no one will have to anymore, myself included.

 

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

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Read Jessica’s full post.

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.

Changing The Healthcare Landscape

Asking a professional patient to name one thing they’d like to change about the current healthcare landscape can be like pulling the pin on one big grievance grenade.

Although I would like more of a community for people over the age of 18 with Cerebral Palsy I’m going to go with something more general and seemingly smaller, but it is one of my biggest frustrations.

Office staff.

There’s the Joint Commission for healthcare organizations.

There’s standards for doctors.

And nurses.

Why not office staff?

They make offices run. They’re invaluable people.

Some know this and use this to their advantage, others don’t seem to have a clue, or maybe they just don’t care.

I’m not saying I’ve left the care of a healthcare provider because of their office staff, but I have thought about it, more than once.

I think maybe there will be a time when that will happen, it just hasn’t happened yet.

If I could change one thing about the healthcare landscape right now, it would be to have some sort of organization that handles the oversight of the assistants of healthcare providers, because although they aren’t in themselves providers they do play a major part in patient care.

They aren’t just handling files and scheduling appointments. They’re handling a person’s life, especially if it’s someone who has a disability or chronic illness.

They aren’t just dealing with annoying people. They can be the lifeline between provider and patient.

I don’t need someone who gets over involved in my care, blurring the lines of professionalism but someone who at least attempt to acknowledge that I can’t just drop everything for an appointment.

Simply put, someone who reads all the information put in front of them before scheduling an appointment (for example).

When someone is rude, or downright mean or neglectful, I wish there was someone, someplace, to report them to. It isn’t a position with minimal consequences if mistakes are made. It can’t be “just a job,” when you’re working alongside people who hold the lives of others in their own hands.

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.