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.

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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.

2016-11-25

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.

Finding Yourself In A Rut

It’s easy to find yourself in a rut. I’m sure I’ve made that clear without needing to write a post directly dealing with the subject.

The first thing to do is determine whether you are in a rut (but if you’re asking, the answer is probably “yes”).

Determine what sort of rut you’re in. Is it a work rut? A blogging rut? A health rut? A life rut?

See what changes you can make. What can you control?

Start with something small.

Usually doing something out of my usual gets me out of a rut, at the very least it helps me focus on something else.

If that doesn’t work make more changes, eventually something will click.

Again, it depends what kind of rut you’re in.

If it’s something like a PT rut that can be harder to get out of.

Getting a second opinion could be a good option, or it could open a whole other vortex of unpleasantness.

Being in a rut is never easy to deal with. It can be hard to get out of the rut, especially when you’re trying to dig yourself out of it.

However, if you’re in a rut you need to get out of it before the situation just grows and becomes a rut that that effects other areas of your life.

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.

Spreading The Love

When you first start writing seriously you tend to look for others in your situation, or at least that’s what I did. When you don’t find any, or at least what you were looking for, you start looking at other health blogs for a “similar enough” community to try to emulate.

I found myself reading a lot of CF blogs, and learning a lot from them. I didn’t find everything missing from the CP community that I had been looking for but close enough. I wanted to connect with people in the CF community to see what I could learn and bring to the CP community.

For example: the issue(s) of transitioning from pediatric to adult care since CP & CF are both lifelong conditions that involve transitions.

It didn’t take long before I found Run Sickboy Run. It seemed like every CF blog mentioned Ronnie at least once. Clearly he was good at whatever he was doing.

I’ve been able to learn a lot about self-advocacy as well as blogging in general from Ronnie. If I can have a quarter of the impact on the CP community that Ronnie’s had on the CF community than I’ll consider it a success; because I don’t think I can even come close to what he’s done (like creating a social network for the CF community).

He’s also been kind enough to respond to my comments for him & leave his own for me. It’s truly something that makes a small time blogger happy. He’s also been nice enough to share his knowledge with me when one of my doctors brought up the possibility pulmonary function testing.

It’s from getting to know Ronnie though his blog (& guest posts by other CF patients) that I’ve found the type of community that people with CP should be a part of. In fact I’ve been suggesting to the professions since I started reading CF blogs that we should look to the CF community as a model for medical treatment; and believe it or not someone brought up the same idea at a CP conference.

Simply put, thanks Ronnie for all you do.

There are two other individuals I have gotten to know that blend health activism and everyday life well:

Jessica at Fashionably Ill & Sarah at Back To Carolina

They both show that professional patients are just normal people who just probably more familiar with their doctors.

*A similar version of this post was written on April 14, 2013

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.

 

I’ve Learned To C.O.P.E.

I have a love/hate relationship with social media. I wouldn’t have most of the friendships I have without it but at the same time I get overwhelmed trying to keep up with everything that I can look at daily. Plus, I use it for business purposes so things can get tricky.

Pat Padley has a formula that has helped me attempt to keep my head above the metaphorical waters of the internets.

Create
Once
Publish
Everywhere

The idea being use all platforms, since each platform appeals to different demographics, etc., but post the same thing, because why do more work than you need.

I don’t always follow this formula, because each of my platforms does serve a purpose so not every post fits every platform but I try to follow this formula when it fits.

Honestly I don’t have a favorite platform, if I do it changes often enough that it’s hard for me to keep track of. However, I do find some platforms easier to use than others depending on the purpose. I do wish it were easier to post across all platforms so “C.O.P.E. ing” would be easier to accomplish.

I find Tw!tter the most accessible in terms of versatility, meaning I can accomplish what I want from whatever device I happen to have on hand at the moment.

I like the idea behind Inst@gram more than I like using it. I find it frustrating that it’s “mobile only” and I try not to be attached to my mobile device (aka phone) 24/7.

I’ve used Faceb00k the longest but I’m far from their biggest fan, especially in terms of their mobile app.

I don’t use any other social media platforms because frankly 3 is enough, unless we’re counting blogging than 4 is more than enough.

I’ve tried to use G00gle+ for things other than the occasional hangout but I just can’t wrap my brain around it.

I like the opportunities social media has given us as a society but I don’t like the algorisms they employ behind the scenes. It makes me suspicious and weary to engage in anything. I like my timelines chronological. I’d like to go back to the idea that everyone has an equal chance of being seen/heard like when social media was beginning.

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.