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.

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

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.

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

I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

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You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

Life In Boxes

Life likes to put people in boxes, sometimes multiple boxes at the same time. I tend to not fit in very many boxes easily and find it easier to live outside the box most often.

In my technical theatre course during college the professors (we had 4) constantly encouraged us to “think outside the box,” so much so that it became a running joke, to the point that during a group project we backed a presentation with a deconstructed pizza box (we weren’t planning that, but it went with the box motif).

I moved so often during college that I turned it into a game, how many boxes does it take to contain all my belongings, trying to use the least number of boxes possible. I pride myself on the fact that my friends who worked of the campus moving service called one of my moves, “the easiest ever.”

My course work is kept in boxes, which remain open or unopened depending on the circumstances of the semester, week, or day.

The majority of my swimming gear is kept in a box, made up of meet related essentials and back up equipment; old goggles and caps, extra suits, and racing gear. It’s kept in the closet, just in case I need to grab something quickly (caps rip at weird times). And it’s more convenient in terms of packing for a meet, because even a 4-hour meet involves more than you’d think.

I asked for a new tech suit for Christmas, hoping that I’d at least get one for my birthday. I wore a tech suit for all of my meets last year and learned all too well of the love/hate relationship swimmers have with them. Basically, they’re meant to be tight, too tight even, expensive, and tend to not last very long.

Knowing what I know now I set out to find a suitable option for my wish list, because my now old tech suit has been discontinued, I knew I couldn’t just go down a size or two and feel like I had done due diligence.

I decided to try and be as exact about this as possible, meaning this time look at actual size charts. It sounded easy enough, except it involved number conversions I wasn’t too familiar with (ahem, the metric system) which needed dealing with before I could continue.

Turns out I was wearing a tech suit that wasn’t just too big, it was almost 10 sizes too big, at least according to the sizing charts. I wasn’t going to go that small right off the bat, although I haven’t completely ruled it out eventually.

I found something close to what I was going for, within reason of course, and crossed my fingers.

I opened the box a few weeks later to try it on before my first meet of the calendar year.

The good news is it gets easier to put on a tech suit with practice, but it can still be a pain to do. The not so good news is it wasn’t as snug as I thought it would be, and for a while I thought maybe I had gotten used to wearing suits that are too tight.

I looked at the box (and rechecked my measurements).

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As it turns out that my actual size according to my measurements, as opposed to the size I wear, isn’t even on the box, which I had to laugh at.

It’s just another example of how some people aren’t meant to live within a box.

Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Get To Work!

Today’s post is all about work.
A small part of me wants to laugh at the thought of me giving work/career advice. I’ve had great jobs and not so great jobs in my short tenure in the workforce. I’ve fallen on my face, both literally and figuratively, more than a person should ever be allowed to.

I’m still figuring it out myself so proceed with caution.

Advice I would give to job searchers:
This may sound obvious (and possibly controversial) but make sure you can do the job before you apply. Don’t just “think” that you can do it. Know you can do it, from climbing the stairs, answering the phone, what have you.

There’s a good chance you know something (or someone) about the company you want to work for. Ask them questions; if you don’t have any connections then try calling them and asking your questions. Be sure and be specific since accessible is in the eye of the beholder. Do your best to look for ways to require the least amount of accommodations possible.

There’s a good chance that you’ll be looked at in terms of “additional barriers” when you go in for an interview. It’s illegal for them to judge your potential employment based on that or say anything about it (but that doesn’t mean the thoughts are off limits).

Also think long term, my work building is considered to be accessible. I noticed a few questionable things when I was hired, but I wasn’t expecting to be there very long so I didn’t think too much about it. Now its years later and I have a different position, one that requires me to be all over the building.

There is no elevator, but there are 3 flights of stairs.

Most of the storage spaces are in overhead cabinets or floor to ceiling closet shelves. There’s also only one fairly large step stool to use.

I’m 4’11” and fatigue easily, so neither of these seemly small details works to my benefit.

I’m basically forced to ask for help more than I would like to (& I hate it).

How I juggle a job with a disability:
I have to treat my time like I have 3 jobs & a disability, because that’s my reality. There’s very little juggling involved these days since everything has different deadlines, time requirements, etc. It does get hard when I have to factor in various “disability related” appointments and my jobs but it’s just something I have to deal with, so I have to make it work. Luckily it only happens a few times a year so it’s manageable even if it’s not always preferred.

I know a lot of people with a disability prefer to work from home. I thought I’d be one of them, but I’m not enjoying it as much as I thought I would. Although it does help that 2 out of my 3 jobs can be done from home (or wherever I happen to be) so I don’t have to factor in additional commuting time and such. As much as I don’t like going to work it does help me to get out of the house (so that’s a factor worth considering).

Tips I would give for an interview:
I’m not the best interviewee, by a long shot. I’m much better at interviewing; at least I think so, so I’m far more equipped to give the point of view from the other side of the table.

I don’t think you should have to disclose your disability, however don’t use it as an excuse later on if you’re talked to about your performance (if it’s not good). If you think you’re falling behind, not pulling your weight, etc., then own up to it and say you’d like some feedback, and then that would be a good time to bring up any disabilities.

If you think your disability may cause unique challenges and you want to make your potential employer aware of them then do so.

I can only speak for myself, but I prefer upfront disclosure to “using” a disability to your benefit, like trying to give yourself an out in unfavorable situations. (Side note: I can’t believe that that’s happened to me in my work life enough that I felt a strong need to mention it.) Also, please don’t assume that because a co-worker, supervisor, or manager, also had a disability that they’re going to see you as a kindred spirit and cut you a break. It could happen, but it could also come back to bite you.

So, there’s my advice for job searching/interviewing/having a job. It may not be popular or politically correct, but no one has ever accused me of being either.

*A similar version of this post first appeared on an old blog on April 8, 2018

End The Word

I stayed away from taking a stand on the r-word for many years on purpose, basically because I don’t feel like “the r-word” applies to me and I don’t have a strong opinion on it (at least not in comparison to others). I’m also not a big fan of banning words. There are words in the English language that I won’t ever say out loud under most circumstances, but I don’t think banning a word and pretending it never existed is a great idea. (But if someone ever wanted to get the ball rolling on banning the word “panties” from existence I’d be game)

I know there are people out there who think my thinking that the r-word doesn’t apply to me as some kind of defense and I’m sure on some level it is.

For the record I have had the r-word pointed in my direction. There have been times I’ve told people that I have CP and their next question is, “So are you retarded?”

Let me just say, no I’m not, for the record.

One of the biggest misconceptions of CP is that everyone with CP, which is a physical disability, also had a mental disability. This is not the case for everyone. I, myself have LD & ADD, but both are relatively mild and neither make me retarded.

I realized that I was saying something by not saying anything directly. I’ve been implying that the r-word is OK with me, and truth be told, it’s really not.

I can sum up my thoughts on the r-word in one sentence.

Ready?

Keep in mind that these are my personal feelings, and my personal feelings only.

Pick another word already.

If you’re going to try and insult me, please be a little more creative. I’ve been on the receiving end of insults for the better part of three decades and they’ve varied only slightly. I don’t even consider them to be actual insults just hollow sounds, think the teacher in Charlie Brown cartoons.

If you want to hurt my feelings evolve with the rest of the world and leave the r-word behind. Finding some other way to insult me will get your mission accomplished. Calling me the r-word will only make you like a fool, at least to me.

In “The Last Lecture” Randy Pausch suggests going for a cliché because they’re clichés for a reason, most people have never heard of them.

As much as I liked listening to “The Last Lecture” and find it valuable I have to disagree on this one point. If you want to get under someone’s skin there’s a 99.99% chance that they’ve heard every cliché, and then some. Stay away from being average if you really want to get someone’s attention.

If you’re still using the r-word to offend someone it’s about time you update your vocabulary to something much more cleaver. You aren’t going to get the reaction you’re looking for (at least out of me). I’m more likely to walk past you and call you a dope under my breath.

If you’re using the r-word “because you don’t know any better.” It’s the 21st century, you know better. You choose not to educate yourself.  So, you also fall into the “still using the r-word” category. That’s your problem not mine; who looks stupid now?

*A similar version of this post first appeared on an old blog on March 5, 2018