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

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When Dreams Become Anything But

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

By this time last year I was dreaming about what my life would be like without school.

I was literally dreaming of being able to pick up a book or watch a TV show without time constrains, journal, and look for more meaningful long-term employment with more intentionality.

Now that I have the time to fulfill this dream it’s more akin to a nightmare than a dream.

I won’t go as far as to say I miss being in school, but it did provide me with a certain amount of structure I’m struggling to create on my own.

The congratulatory messages have slowed down, but have not stopped completely, which adds to the complexity of my situation. The questions of “what’s next?” have followed, and I feel utterly stupid saying “I have no idea,” even if it is the honest truth.

I have an idea of what I’d like my “next” to be but that doesn’t mean it will happen, at least not right out of the gate. It would be nice if that happens but age has taught me to be more realistic than optimistic.

I check job sites every day and sometimes submit 3 resumes, complete with individually written cover letters. I have gotten interviews, so that’s one step further than I had been getting in the last few years, but nothing past that.

Nothing.

I knew looking for a job wouldn’t be dreamlike. I was pretty sure it would be pretty much the opposite. But I was hoping the other things I had on the back burner for years would give me a sense of balance, not getting a job would be offset by being able to read a book at will.

I see how ridiculous this sounds, but I believe it, well believed.

I have read a fair number of books in-between writing cover letters but it’s not as dreamlike as I would have thought. The reading books part, not the writing cover letters part.

It’s a weird experience to write about yourself. You become incredibly analytical of yourself, every shortcoming gets magnified and every strength gets minimized, at least if you’re me. Then you’re left wondering, “is this really me?” “Is this really my best self?”

It’s really not the best place for your mind to be in when you need to be on your game, but you make do.

Now instead of dreaming of what my life may look like a year from now (or even any shorter window of time) I’m managing my expectations, not putting all of my eggs in one basket and not getting my hopes up most of all.

Life isn’t turning out the way I thought it would in post-postgrad life but what does?

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

Off Balanced: A Review

Disclosure: I received a review copy of Off Balanced for free in exchange for my honest review. Regardless, I only recommend products or services I use personally and/or believe will be of interest for my readers.

I’m not good at giving honest reviews of things like books, movies, TV shows, etc. Actually I can manage the honest part; it’s the in-depth & detailed parts I have trouble with. So when I was asked to review Off Balanced (available on Nook or Kindle) by Zachary Fenell I figured I’d give reviewing another shot.

Off Balanced is the real life story of Zachary though his school years, primarily middle school though college. As Zachary puts it, “You stick out from everyone else at an age where all you want is to blend in and be like everyone else.”

Contrary to what I’ve found to be popular belief not everyone with CP knows each other though a series of coincidences & not everyone with CP can relate to each others experience.

It’s rare to find a book that’s so relatable yet so different from your own life that you want to keep reading & see it through to the finish. But this is one of those rare books.

Though the teen years everyone faces some form of social isolation at some point. However having CP adds another layer to the social awkwardness. Your brain & your body lack the coordination you’re physically awkward and emotionally awkward. It’s not a hole you’ve dug for yourself but you’re still stuck, and you still have to find a way to dig yourself out.

I can relate all to well to the summers devoted to physical betterment. The hours you spend alone in your personal training camps for the sake of the fresh start a new school offers to the kid with the funny walk who leaves class early & trips often. Then in spite of all the training something derails your plan, anything from well meaning parents, to overcautious administrators, to an orthopedic surgeon.

I have to take a minute to go back to the well meaning parents. There was little that made me truly laugh while reading Zachary’s story, especially when it came to parental intervention. But reading that he left his cane in his locker & he use to leave class early to take the stairs (when he was to leave class early to take the elevator) to his next class, it looks like creative thinking may be an unrecognized trait of a person with CP.

Zachary proves that putting yourself out there when all you want to do is blend in is really the best way to make something of yourself, and tell all the naysayers (even the ones in your own head) differently.

Off Balanced proves that an individual with CP is just that, an individual. The fact that they have CP is secondary, a detail that contributes to the whole picture of a person.

So in closing I’d like to say one last thing.

“It was good, you should read it.”

*A similar version of this post was written on February 10, 2012

Someone Like Me: A Review

Thirteen Reason’s Why You Should Read “Someone Like Me”
by John W. Quinn

  1. I could’ve written multiple pages of this book by page 30. So if you like this blog you’ll like this book.

2 John’s taken the pressure of me to write a book.

  1. It gives “Don’t Ask Don’t Tell” a whole new meaning.
  2. It’s not all sunshine & rainbows, because it’s real.
  3. “…if pain is constant, is it even pain? Or is it merely my normal state of being?” (p. 20)
  4. A guy who made it though boot camp was told “heel toe, heel toe” in his lifetime.
  5. It proves the call to service is really meant for everyone.
  6. John’s best friend called him a quitter, so he didn’t quit.
  7. This book pretty much epitomizes that hard work pays off.
  8. Chapter 6
  9. I’ve already sent it to someone else to read, something I rarely do.
  10. I’d give it my full endorsement (if asked)
  11. “You are never alone. There is always hope”

*A similar version of this post first appeared on an old blog on February 17, 2011

 

About Help Continued

I had no idea this was going to go this far, but God had other plans I guess.

What stated with a Tweet:

“If someone with a disability needs help they’ll tell you & how. DON’T tell them what they need to do & how. That’s the worst thing to do.”

Evolved into a post*:

When someone tells you they need help ask how you can help them. It probably took a lot to even ask for help because honestly who really wants help. It’s like admitting weakness. To admit you need help you need to come to a point when you realize admitting your weakness might actually work out for the best. To turn that around on someone is at times just cruel, not to mention a break in trust someone had in you. Speaking for myself, I don’t ask for help from someone I don’t trust on some level, no matter how badly I need it (I have plenty of scars from bumps and bruises to prove it).

Help comes in different forms. I don’t like knowing I’ll need a lot of help from others, or at least I like to think that way, so I try and avoid it as much as possible. And if I do end up needing help I try to tell people I trust and I know they don’t usually mind it, and if they do they’ll be honest about it.

Ask how. Don’t tell how. In all likelihood someone’s put more thought into it than you realize. Attempting to think you know better, and then actually saying it, you may as well spit on them or slap them in the face. Not only are you not helping, you’re making someone wish they never asked in the first place.

Who wants to live in a world where no one wants to ask for help for the simple fear of being disappointed? Certainly not me, and I’m someone that needs some help from time to time (but find someone who doesn’t).  *portion of original post

Has now moved into conversation:

While spending time with a friend’s parents her dad told me about his recent experience with trying to help someone; which left him not wanting to help someone ever again (which I know he won’t stick to because he’s not that kind of guy). I should tell you that he is an amazing man & anyone to receive any help from him will not be disappointed. He’s also the type of person you can talk to about anything for any length of time; he may be a physician by trade but he’s been known to have conversations about church history, bridge structure, and wars in the 1800s without difficulty. So I thought explaining “the help thing” to him would be a good place to start if this were to ever become a thing.

I had my post, and previous experience, in mind when choosing to wade into the waters with this one. Unfortunately, things didn’t go as well as I hoped it would, which is totally my fault.

In the end I told him about Jennifer Rothschild’s book Lessons I Learned In The Dark. I had 2 reasons for this. The first being I know he likes a good read which this book certainly is. The second being I could never put the right words to disability before this book, but now I can, or at least I try. Really it just seemed like the best way to save my point the best I could, begin at the beginning and all that.

In the end I can’t remember what I said. All I can do is hope I did the right thing.

And have faith that one bad experience in trying to help someone won’t stop a person from trying again (and again, and again).

Because if it does that doesn’t help anyone at all.

Now that I’ve gone this far what’s next?
A book?
(God help us all)

*A similar version of this post first appeared on an old blog on December 9, 2011

From Here To There

I’ve given you my thoughts on SDR 30 years later, but what I don’t think I really told you is what that can sometimes mean for me when it comes to daily living.

Having Cerebral Palsy means my brain can’t always communicate with my muscles effectively, or at all. Not only do I have to think about every move I have to make but sometimes I have to think about every step of the process. As John Quinn says in his book Someone Like Me it’s not uncommon for me to have to think out how to walk, as in ‘Go. Pick up left foot. Put left foot down. Pick up right foot. Put right foot down. Stop.’

Now because I’ve had a SDR there’s always some extra thought in the process, especially if I’m doing something new, requires correct form, or it’s hard for me to see my feet. I have pretty good spatial awareness given my deficits but it can take a while for my brain and the rest of my body to get on the same page.

I’ll give you three examples:
-If I’m asked to move my feet laterally I have to be looking at my feet in order for even the most remote chance that this could happen.
-If I’m going to be prone on an exercise ball I often ask someone to “set my feet” before I start any exercise, because being able to look at the position of my feet and stay balanced on a round movable object and then move my feet if necessary. I have gone to check the alignment of my feet only to find one-foot laying parallel on the floor and the toe of my other foot pointing to the other one. When you can only feel pressure in your feet it’s pretty easy to think you’re balancing on your toes.
-If I’m going to cross my legs I usually have to pick up one leg and cross it over the other, unless I want to chance flinging myself out of a seated position by allowing my legs to move under their own power (which has happened).

” Does that make sense?”

“Up here it does, but who knows what’ll happen when it gets down there.”

This isn’t an uncommon interaction between a physical therapist (or trainer or coach, etc.) and myself; you see it’s not so easy to get instructions from here:

To travel down here:

Spine

To end up here:

boots

And get the desired results.

Yet it happens every day, multiple times, more than any of us can probably count.

So we should all count our blessings for each time traveling from here:

To there:

shoes
(or anywhere else)

Is successful.

Because sometimes it ain’t so easy.

*A similar version of this post first appeared on an old blog on February 23, 2010

When Normal Is Nice

If you asked me 6 months ago if I thought I’d want to be in a celebratory mood when December came around I would’ve had some kind of major emotional response, and it wouldn’t have been pretty.

The last year, particularly the last 6 months have been almost unreal. Aside from my (un)usual course load and near insane travel plans there has been a lot of navigating uncharted territory, and little of it was pleasant, or good.

I tried burying myself in work and school but it didn’t always work. There were sleepless nights, lots of questions, and even more tears.

One of the more notable things being sitting next to someone’s hospital bed rather than being the one in the hospital bed, normal people would consider that a good thing but coming from the point of view of a professional patient it was uncomfortable.

I was in uncharted territory.

I’m much more comfortable being the one in the bed than next to the bed. I think family, friends, and medical professionals would prefer it that way too. I’m pretty much a pain in the ass when I’m the patient but I’m insufferable when I’m the “family support” (and the fact that I can recognize that should tell you something).

I’ve had those uncomfortable conversations that people like to avoid, all over again, because if I’m ever back to being the one in the hospital bed. I want everyone within a 20 mile radius of my room to know what my wishes are, right down to how I’d like to be dressed, in the event I cannot speak for myself.

Then things changed, again.

What started as relief turned into a whole other series of questions, in the end I had to recognize that this was “the new normal” that people talk about so often; another uncharted territory that required exploring, and then accepting.

I thought I knew where I stood on a multitude of issues, but I was forced to reexamine my motives and change my position on more than a few things.

For example, I never understood how people could say that a loved one was “still there” after suffering a stroke or being diagnosed with dementia. Now, I’ve read My Stroke of Insight and many other books on neuroscience. Intellectually I understand that someone isn’t completely gone but I couldn’t grasp it on any other level, until I encountered it up close and personal.

And it’s amazing to witness (although, admittedly, not always easy).

Like so many others I’ve focused on the quality of my life over the quantity of my life (and then proceeded to project my thoughts onto others silently as well as out loud). It’s not so black and white. There’s a whole lot of grey in the in between that needs to be acknowledged, questioned, processed, and then accepted.

Allowing yourself to able to live in a normal, even if it is a “new normal” is nice, if you let it.

#CNMC15

The 1st stop of my trip was The Catholic New Media Celebration in Atlanta. Which was well over a month ago and as much as I wanted to write about it sooner but whenever I had the words I didn’t have the time and when I didn’t have the words I had the time.

At the last CNMC my recap consisted mostly of pictures. This time is different though, because I didn’t take any pictures (or tweet a thing) thankfully I’m not alone.

And if it works for Greg Willits than its good with me too, at least that what I’ve been telling people when they ask to see pictures (and then I have to explain who Greg Willits is).

Tiffany was generous enough to agree to be my roommate and companion during the weekend. We met in the airport and went to check in at the hotel (after my attempts at the damsel in distress routine to gain assistance from Billy Newton failed miserably).

You should probably read Tiffany’s account of the experience since her post was fresh in her mind when she wrote hers, unlike this one.

Our room wasn’t ready for us so we headed over to the Eucharistic Congress while we waited for a phone call from our hotel. We decided pretty quickly against attending any of the talks, mainly because we were both sleep deprived. Instead we strolled around to see if we could find anyone we knew.

One of our first stops was the SQPN booth, after a quick detour to my school’s booth) but more on that later), where we met Fr. Cory & Fr. Darryl and took our now pretty famous extreme selfie.

Once we realized it was past check in time and we still hadn’t gotten a call about our room we headed back to the hotel to check in & finally decompress for 5 minutes.

While Tiffany was at the Jubilee Dinner I did homework. And by did homework I mean I went to the gym, ate dinner, took a shower, and kept tabs on the Jubilee Dinner thanks to the #CNMC15 Tagboard Lyn Francisco created. Basically I should’ve gone to the dinner because I wasn’t I wasn’t helping myself out in any way, at all.

The next day was when all the real fun happened. Tiffany & I sat at the same table with Sr. Anne which was total Providence, in my opinion, so it was nice to talk to her in person since I’m been telling people in my life about her for a while now.

Greg Willits’ keynote was amazing and just what I needed to hear, without knowing it’s what I needed. Don’t you just love when that happens?

The rest of the day was pretty much a blur of workshops and networking, and most importantly genuine community.

I had a list of goals in my head of things I wanted to accomplish and a list of things I’d like to accomplish but it would be OK if I didn’t. I was able to cross off everything on both lists and then some. 🙂

Like cornering Capt. Jeff, The Airline Pilot Guy, at lunch and asking him all kinds of air travel type questions; such as why “closing the bridge” due to lightning means people can still get off an aircraft but anything gate checked needs to stay put. Thanks Capt. Jeff & sorry about the inquisition.

Other highlights of the day were meeting Lisa Hendy of Catholic Mom and talking to her more about how she got started as well as talking to Maria Johnson in person since I’ve been bugging her for her feedback on various things for at least the last year.

After the conference was over I headed back to the hotel with Mac & Katherine Barron, of Catholic in a Small Town, who happen to be two of the nicest people ever. I had a great time talking with them and I hope to have the chance again in the future.

Once back at the hotel I met up with Tiffany and a few friends to go to dinner, except those few friends had turned into a group of 17 (?). I’m not even sure how many of us there were but it was one of the best group dinners I’ve ever been to, and I know there are a few pictures of it floating around F@cebook. During dinner I sat next to the older sister of a college classmate which is pretty unbelievable, even considering our alma mater).

Lisa, from Of Sound Mind and Spirit, was also at my end of the table with her kids. She was great to have dinner with and now I want to visit Houston!

After dinner I had every intention of packing and going to bed but Tiffany invited me to go with her to meet a few people in the hotel bar. So we headed back out the door and downstairs (I blame my severe FOMO, in spite of my introverted-ness) where we enjoyed more socializing and met (all too briefly) Jennifer Willits.

After such a great day with everyone I really didn’t want to go to bed but one can only hold off reality for so long. Thankfully Allison, of Reconciled To You, and Tiffany had made plans for breakfast so the next morning we said our good byes to Steph (TV Rewind Podcast) & Marika (@oneeyedsmiley) in the lobby before heading to the airport for breakfast.

My CNMC experience ended, at least for now, with a final good bye to Dee, of Catholic Vitamins, before heading off on the second leg of my trip. Now that home I have one final thing to say, well Steve Nelson said it first, but I agree.

And if you want another good review of CNMC15 you should read Steve’s thoughts (and/or Maria’s link up).

Grad School: The 1st Year

I’ve been a grad student for a full year. It’s a cliché to say it’s been a blur of a rollercoaster ride but it’s the truth. I remember (although barely) being sent a blank tracking sheet and being asked to fill it out and email it to my advisor prior to discussing the upcoming year. I had seen it before, prior to deciding which degree program to apply to, but this time was different.

This time was “how am I ever going to take this many classes?”

A year later grades are being added and the next year of classes are being filled in.

It isn’t looking like I’ll be in school forever anymore (although graduation is still far off).

I figured I’d average one class a semester so I wouldn’t get overloaded but once reality set in that plan changed, numerous times in fact.

So I began taking 2 classes a semester. Not a big deal really. I was surprised by how natural it felt to coordinate so many schedules each dictated by another person.

I had a handle on the year until this past semester, and then things went nuts, like giant coconut sized nuts. I thought about dropping my classes but I was too far in to quit now, and dropping classes would just mean having to take them again later on.

So I sucked it up, sometimes barely, and kept going. I put down the movies and fun social events and picked up the books more. School became my escape, although I wouldn’t say I buried myself in my books (but that’s another story really).

I watched my “need to read” pile shrink.

I did in fact read the entire pile except 1 book (and the encyclopedia, I’m not that nerdy). However that’s just the book pile the articles and ebooks is another story.

Last week I turned to the pile to pick up the next book I needed to read and realized there wasn’t one there. I was relieved, and a bit lost to be honest.

I started to clean up the pile that’s accumulated in the last few months, except it’s not just from this semester. It’s from the last school year, which started in September.

It’s been a long year.

It’s time to clean, organize, and put away.

And of course gear up for the next year.

The battery in my mouse is dying, right on schedule.

If I had any skill at all I’d probably make my friends and family a cake that looks something like this because I more than willingly admit that I haven’t been the easiest person to be associated with:

Oh yeah and I started posting on Instagr@m after creating an account who knows how long ago.