The Return Of The Envelope

I was standing at the admissions desk as NRH filling out paperwork before my first ever PT session as an adult. I wasn’t freaked out about the PT. I’ve done that enough to have an odd comfort level. The paperwork was annoying, but typical, until I got to the “emergency contact” portion. That’s when I freaked out.

Who should be my emergency contact?

Typically it’s my mom, but I had second thoughts. She was 6 hours away if the traffic cooperated. If there was going to be a real emergency that required the informing of someone they should be closer than 6 hours away. I thought a pizza delivery “30 minutes of less” window would be ideal. So I put down my roommate. We barely knew each other at that point & couldn’t think of a single person who I knew would be O.K. with it, without asking first.

“When I was at NRH today I had to give an emergency contact. I listed you. If you’re not O.K. with it I can change it.”

“I’m fine with it. Just let me know where you keep your stuff. I keep an envelope of all my information right here.”

Well that was easy.

Now I just had to put together an envelope:
* Medical history
* Surgical History
* Important Phone Numbers
* Copy Of Insurance Card

I left it in my desk until I graduated. When I moved across the country I told my housemates where they could find my info, if needed, because I put down the house number as my contact (meaning there were at least 3 potential contacts).

Almost 2 months ago I went to urgent care in the worst pain of my life; because I needed another reason to put off having children, if at all. I sat in the waiting room while my mom filled out my forms trying not to gag & praying I’d blackout, since that seemed to be the only potential relief.

I was sent to the ER where I sat for the equivalent of forever, before I had to answer all their dumb questions AGAIN. I wish I had my envelope back, more than one actually.

“Can we hurry this up please?!?!?! I’m in a lot of pain here & I’m gonna barf.”

(Painfully unhelpful response I won’t repeat)

Twelve hours later I was being admitted to a medical unit because my test results were “inconclusive.” Guess what happens when you get admitted on a unit? You have to answer the same questions all over again, and this is after 24+ hours of no food, no sleep, a full day of tests, and lots of M0rphine & Z0fran. I was literally falling asleep when the attending came to do her new admission rounds, because at that point you really care what a hospitalist is/does.

The conclusion of all the “in-conclusion” was that I probably passed a kidney stone & it wasn’t my appendix. The evidence being one swollen kidney since no one was able to find the kidney stone or appendix.

My conclusion? Time to bring back the envelope.

I had a follow up with an urologist in order to attempt to put this whole thing to rest since my goal is to never repeat this experience. The first was to tell me that it does in fact look like I passed the stone & to give them more details about my time in the Big House. The second was to go through everything again with the urologist after an ultrasound.

I’m “back to normal.” No restrictions, since no one seems to be able to even guess how this all happened. It could happen again, or not. My appendix is still missing however.

*A similar version of this post was written on August 21, 2012

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The Fallibility Of Men

I’ve stayed away from making any comments about the current climate of sexual assault. It was a conscious decision, one I don’t regret at all, and had no intention of changing, that is until things got too close for comfort.

I’d recently heard that someone I’ve held in high regard has multiple accusations of sexual abuse against them.

(I will not be naming this person because that is not the point of this post and I don’t want to engage in a debate on the subject)

I’m heartbroken, as anyone would be.

What I’m surprised by is the other emotions that have surfaced.

I now have some clue of what people mean when they say, “They would never do this,” or “If this were true I would have known.” Etc.

I can honestly tell you from the bottom of my heart I would have never imagined this person would ever be accused, never mind have the accusations be found as credible.

It effects “other people.”

I thought I knew it didn’t just happen to “other people.”

My brain was wrong. I was wrong.

I’m included in “those other people.”

I understand that people want this person to go to prison, I would too if I could see this objectively without needing to remind myself that I should stay as objective as possible. I don’t want to see them go to prison but if that’s what the law calls for then that’s what needs to happen. How I (or anyone else) feel about the situation should not come into play.

Such acts, like some others, are unforgivable, and inexcusable.

I, also like most people, are wondering what the hell we’ve been a part of for so long.

How could this have happened?

How could it have stayed a secret for so long?

Why didn’t someone say something before now, and even if someone did than why didn’t someone else listen before now?

I can honestly tell you, and anyone else that may have their own doubts, that what you know of a person may not be the whole picture. They could have secrets, even not-so-secret secrets . The person you know may not be the same person other people know, even if they inhabit the same body.

Men (and women) are not infallible.

When Calls The Vocation

I’m not a big fan of cheesy TV shows, unless I want something to make fun of or watch mindlessly. I’ve rarely watched “The Waltons” and “Little House On The Prairie” has never been my cup of tea but if it’s from Jenette Oke than I’m all over it, at least until the 5th season finale of “When Calls The Heart.”

The main character Mountie Jack Thornton, played by actor Daniel Lissing, was killed in a mudslide leaving his young widow, and longtime love interest, Elizabeth.

The death of “Mountie Jack” came at the end of a season packed with major life events, so it wasn’t in an effort to “liven up” the series. Daniel Lissing chose to not renew his contract with the series, from what I understand.

While I was upset that a character I loved would no longer be part of the show, I can understand an actor’s desire to move on to other things. It happens. It’s one of the best parts of being an actor for many who choose the profession.

What I have trouble making peace with was the choice to kill off the character of Jack Thornton.

From what I understand the production team felt they had a few options:
1) Recast the character with a different actor.
2) Have Jack go to Elizabeth and tell her that his call to duty was so strong that he thought it best to break off their engagement.
3) Have Jack die.
4) End the show.

I agree that recasting would have been a bad choice and if I’m being honest I’m torn over the other options, even though the decision has already been made, because of the reasons given for choosing one over the other.

Their reason for having Jack die was because Elizabeth and Jack loved each other so much that they only way he could ever leave her was through death.

This does not sit well with me, not because it doesn’t happen and not because I wish they would have found another solution.

Because it doesn’t sound like they gave enough thought into what saying “yes” to a vocation over love. Saying “yes” to something bigger than yourself when society says, “you have a great love, you can’t mess that up.”

I would have preferred that the show ended after five seasons, in all honesty.

I may sound like I’m speaking from my “Catholic high horse” on this one but people do break off engagements to enter a religious order, enter the seminary, embark on a career, or anything else that they feel is more than a job (usually meaning that romantic relationships have to end).

What upsets me most about how production decided to handle this particular situation, the show is called “When Calls The Heart,” but it didn’t give enough credit, in my opinion, to a heart’s call to a vocation. The heart can receive more than one type of “call”, and sometimes more than one call at the same time, every situation is different.

I get that everyone tends to fall on opposite ends of the emotional spectrum in terms of storylines, wanting them to end “happily ever after” or “in complete destruction & unhappiness” but more stories should be portrayed in the media, like someone choosing a vocation of service over their own feelings for one person.

Someone once said that once you know someone who became a priest it becomes easier for more people you know to be or become a priest. I think that’s true no matter what the “job” or in this case vocation. Once you know it’s possible for one person you realize it could be a possibility for you too.

Why couldn’t Jack go to Elizabeth and tell her that his call to serve as a Mountie was so strong that he felt it best to break off their engagement? It could have been possible, because it is a reality that should be imitated more often in art.

The Matter Of Discernment

The matter of discernment puzzles me.

I was 20 before I even heard the word discernment, and then I heard quite regularly at that. It didn’t take long before “discernment” sound like the magic word for some secret society. It annoyed me to no end for a long time.

I’m not much closer to discovering what discernment really means ten years later. Although I have been told on numerous occasions that it’s not a “get out of jail free card,” so I should really stop treating it like one.

Yeah, I’ll get right on that.

It’s one of those necessary evils of life, especially if you’re Catholic, if you ask me.

There seems to be an implication that one cannot possibly find their vocation without some sort of discernment.

While this is more or less true I don’t think it can be expressed in such a cut and dry fashion if people are really going to understand discernment.

I understand that there’s no definite “right” or “wrong” way to discern.

However I’m not sure I’ve ever done it “right,” or at least the best way for me.

I have, however, done what everyone else has done.

I’ve gotten up for the sunrise masses and before class rosaries (mostly).

Gone to prayer groups and Bible studies.

Rarely ever, and I mean ever, missed fellowship or adoration.

Made every retreat possible, even a yearlong SEEL retreat that included spiritual direction.

I even joined a discernment group (albeit for other reasons, at least initially).

And they’ve had great success, although a different definition of success than the secular.

I have the dubious distinction of being a religious sister’s prayer partner for a few months during our junior year (during her final pre-nun years). Just to give you an example. I like to tell people that I helped facilitate her discernment process, because that’s how things happened in my head.

It took me a while to really get that discernment has no timetable. Although it eats on my nerves when people say they’re discerning something and you know for a fact that they’ve been doing it for years. Talk about using discernment as a “get out of jail free” card.

Let’s not even talk about the people who are so certain of their plan because they’ve discerned it within an inch of their lives and then after a day (or what feels like a day) they do a complete change of direction.

Because the mysteries of discernment go both ways, and every which way.

Discernment’s never been my thing, at least not in the same way swimming or encountering unpleasant people seem to be my things.

It would be awesome if God would just speak very loudly and very clearly after a period of prayer and self-reflection.

Unfortunately, discernment doesn’t work like that either, at least not for most people.

Discernment is important. It’s also becoming a lost art in some aspects. Just don’t ask me for advice on it, because I have no idea what I’m doing.

*A similar version of this post was written on August 6, 2014

Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)

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:

inside-out-riley-eye-roll

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.

giphy

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.

Something

It’s been a busy week for me, so busy in fact I thought I might go a week without blogging, because the previous post was written before its actual postdate. So, I have about an hour to come up with something before the rest of my week, weekend included carries me away in its wake.

Oh, course I have next week off, and seemingly all the time in the world. Why does that always happen?

I’ve spent a fair amount of time in the car this week going from place to place, particularly yesterday, so I’ve had plenty of time to think in the midst of my self-imposed craziness.

It’s no secret that I’ve been doing a lot of reading these last few months, but even so the one thing I haven’t been reading is the Bible. There’s no excuse for it, it is sitting on the end table after all, less than a foot from where I sit to write, although I have been known to do a quick “verse check” now and then, thanks to the world wide web.

Although verses are still finding their way into my thoughts, no matter how long it’s been since I’ve had quality Bible time.

Even though I’ve been so busy I’ve been taking time, or rather seizing opportunities, to get out there and make an attempt to step out of my comfort zone. Since having surgery, and even before that, I’ve felt the Lord had given me a special mission. For those of you who have read Sleeping With Bread I’m talking about my sealed orders here.

But is hasn’t been an easy process………
(Is it ever?)

I know I can’t sit and wait for things to happen. But what direction do I go in? What if I go the wrong way? What if I go in the exact opposite direction of where I’m supposed to go?

So I’ve been being intentional and thoughtful of how I spend my free time these days, beginning this week. I’ve been trying to get “me,” for lack of a better word, out there. I’m considering saying “Yes” to things I would typically say “No” to. Just to see what happens. Maybe saying “yes” when I would’ve said “no” will make all the difference.

It’s working out well so far, as far as I can tell anyway.

Here’s to saying “Yes” even when you really don’t want to.

*A similar version of this post was written on May 21, 2010

On Change

I’ve been trying to write something for more than a week. You’ve been there, right?

If you haven’t, lie to me.

May has been a challenging month. It went from being, “If I can just make it though these next few weeks” to “If I can just make it though this month.”

For those of you familiar with the spoon theory; I am out of spoons, almost.

I’m not sure where or when it started. At this point it doesn’t matter much. Life happens.

May (and a portion of April) has involved a lot of change. I have a love/hate relationship with change. It’s nice to break from the usual but the usual is the usual for a reason, because it works.

I’ve been thinking a lot about change. It’s a common topic of my life these days. I use to think I could handle change pretty easily, sure there were rough moments but they were manageable. And it was only one thing happening at once, usually.

These days every change seems to be followed by another, if not preceding another. It’s a lot. When I found myself “escaping” to my day job I discovered my “fill line” for change.

I keep telling friends and family that I feel things changing, and I wonder if they’re for the better, for the worse, or just time for it. My brain has been going through a category phase. It needs to categorize as much as it can as quickly as it can.

The thing that’s bothering me about all of this change, I think, is that 99% isn’t under my control, I chose very little of it. Change is exciting when you choose it or when you choose to accept it. I’ve had to figure out where I fit, if at all, in all of it. It’s not a fun process.

Change has a ripple effect. Even if you’re not the one changing the change can still affect you; hence the reason why I’ve had to figure out where I fit in constantly changing interpersonal dynamics with those around me.

To make matters worse, or at least it felt like it at the time, an opportunity presented itself that I wanted to take. It just wasn’t as easy as I thought it would be.

I had to write an essay. But it just wasn’t just an essay. It had to be a personal statement.

In an effort to lesson my mental anguish at the process people asked if I had something already written that I could just update. Under the advice of a high school teacher I’ve kept everything I’ve ever written, mostly, even notes. So it wasn’t out of the realm of possibility that I had a personal statement somewhere, or something I could turn into one.

I did the math, for filing purposes, at least at first. The last time I wrote an essay, of any kind, was ’07 (ironically April).

A lot has changed since then. I’m not a completely different person than I was back then but a lot has changed. None of those most “recent” essays would do.

Change happens. How you handle it is where the real change(s) seem to occur.

In the meantime, does anyone out there have any extra spoons?

*A similar version of this post was written on May 30, 2013

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.

Speaking, Again

The last podcast recording I meaningfully took part in was about a year ago. I was feeling that it was time to move on, because podcasting is more work than I had anticipated, even though I basically just show up and talk.

However, the fates had other plans.

I stopped watching Speechless halfway through the season. It wasn’t intentional, but it was a perfect storm that made it pretty easy to stop watching & not feel like I missed anything.

Instead I watched other things, on network TV, cable, and Netfl!x; and noticed a lot of portrayal of disability (and lack thereof, etc.).

Some of it was good, some was great, some was downright horrible. I asked Daniel if he would be interested in recording a podcast on the subject, and he was.

So, we did.

2018-05-02

What do you think about the various portrayals of disability on TV (or media in general? Do you have any favorites? How about aversions?