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

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Is Blogging Dead?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is blogging dead?

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

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?

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

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

CP, Aging & Death

Disclaimer: this post isn’t meant to be depressing, but it may end up that way, so proceed with caution.

Around “Rare Disease Day,” yes there is such a thing I received a text asking a simple question.

“Is there any chance of early death with CP?”

Thus, ensued a conversation on whether the direct cause and effect of one’s death can be attributed to CP.

Such a fun conversation, but necessary given the various misconceptions around CP.

For the record, Cerebral Palsy itself does not shorten someone’s lifespan but often other conditions that can come along with CP do shorten a lifespan.

Not long after my conversation John W. Quinn posted a video about age and Cerebral Palsy.

John is the oldest person I know with CP but I may have met another person who is older, but just once and I can’t remember who exactly she is.

Cerebral Palsy within itself does not cause someone to die sooner than expected, unlike other conditions like CF, but it does bring on the aging process at a faster rate.

If you ever heard me get out of bed in the morning you’d know exactly what I mean.

Because our muscles are tight most of the time it puts more stress on bones and joints than the average person causing them to “crack under pressure,” so to speak, earlier than most.

Chronic pain is very common for people who have CP, no matter what age they are.

When talking about CP, aging, and “death by CP” the answer isn’t as clear cut if you have other issues that have an effect on your health, but it’s also not a topic that gets talked about a lot either, again because CP is seen as a “kids disability”.

Sugar & Spice & Not Always Nice

Because Cerebral Palsy is seen as a “kids condition” and people think physically disabled also means mentally disabled it’s not uncommon for people to talk to me “below my grade level,” so to speak. It’s something I’m used to dealing with but a lot of my (able-bodied) friends aren’t and it’s interesting to see their reactions.

I often say that I don’t like people, mainly because I hate when people talk to me like I’m less of a person. I honestly don’t mind talking to people but when it’s all inspiration porn and/or questions I’d prefer you move along (and I’m not the only one who feels that way).

Here’s another thing you may not know about people with disabilities we tend to be though of as nice, until we open our mouths and say something not so “nice” then we’re (usually) labeled as “mean,” whether or not it actually is, is another matter altogether. It doesn’t stop there either, if one of us is “mean” than there is a misconception that we’re all “mean” or even worse, “bitter” because we’re disabled.

So, there is social pressure for some persons with disabilities to speak well on behalf of the disability community. It’s not the type of pressure that tends to make people perform well, like butterflies on opening night. It’s the kind of pressure that makes you second guess everything you said for days afterwards.

Is it uncalled for? Yes. But it’s a reality.

I’ve often wondered if we should stop putting ourselves through the mental hoops of whether or not “we’re representing the community well” and just be ourselves. Then would able-bodied people see disabled people as more human? Like actual humans, as in, we’re not all binaries. We can have a range of emotions and still be ourselves, we’re not nice all of the time, just like we’re not mean or bitter all of the time.

Just like most other people on this planet.

What people forget, or maybe they don’t want to know, is that people with disabilities are more alike in terms of personalities but we have this added pressure to put on a public face for any number of reasons, one of them being the all too certain possibility of being peppered with questions about anything and everything about our lives.

Imagine having to be on guard for that anytime you leave the house.

It’s exhausting.

My able-bodied friends have been noticing it for a while and they even get annoyed by it. I think because they see me as a person rather than some sort of figurehead who’s open to giving something possibly similar to a stump speech or a press briefing whenever the time fits.

We’re not all sugar and spice and everything nice every point of the day, because we’re people.

I’m Not An Expert, But I Play One In Life

March is Cerebral Palsy Awareness month, as a person with a disability, which happens to be CP, I feel obligated to do my part in spreading a greater sense of awareness; because although CP is common few people really know about it.

I’m not an expert in CP. I have not studied it in textbooks, read studies, or analyzed people with the disability, from an objective standpoint.

I’ve lived more than three decades with Cerebral Palsy; I’m not an expert, but I play one in life.

Lecture halls and textbooks have their place but there’s something to be said for the value of living something day in and day out without the sterility that can come with formal education.

So, what do I have to tell the world, or at least the internet?

It all depends.

I used to put everything out there, or at least that’s what it felt like, now I pick my spots, just because I don’t put it out there doesn’t mean someone else can’t put it out there, or just because it’s not out there doesn’t mean it has to be out there.

Boundaries, they’re a wonderful thing, when used well.

But boundaries can, and do, change.

Every once and a while I relax the boundaries, and it’s mainly for one reason.

I can talk about Cerebral Palsy as much as I want but there’s only so much writing and talking I can do without some sort of feedback. There’s only so much yelling into a void anyone can do before losing their voice?

I’ve done this before, and I want to do it again.

What do you want to know?

What questions do you have?

What possible myths have you heard?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

Grad School: The Final Semester

I’m pretty sure a lot of people never thought I’d reach this point, honestly, I had my own doubts at times.

As far as semesters go this one was fairly lonely, like my first one, except this time I was able to recognize the loneliness. I knew a few people in class but not well, and I really didn’t want to make any new friends (yes, I am that kind of person). I wouldn’t go back to last year if given the choice, but I missed comradery, much like last fall.

You’d think I’d have the whole studying routine down by now, but no, there were plenty of nights when I was clicking submit at the last minute. But there were times when I completed assignments a week ahead of time. So yeah, that time management thing went to both extremes.

Although there were times when I wanted to quit, no matter what semester it was, and return to life as a normal person now I don’t know what to do with myself.

I’ve caught up on Netfl!x, which didn’t take nearly as long as I would’ve thought. So much so that I’ve started and finished watching other things.

I’ve even read a book or two, which I swore I wasn’t going to do for 6 months, at least. And by book or two I mean I’ve read a pile or two of books.

I took a short break from swimming, but it was more of necessity than want. And I regretted it within 2 minutes of getting back in the water, the break from swimming, not the swimming itself.

People keep asking me “what’s next?”

Honestly, I have no idea.

Am I cut out to be a normal person anymore?

My face has been buried in books and writing papers for years. I’ve had to turn down more social engagements than I can count, I don’t care to, really.

School has been my excuse to not do things I don’t want to do, but didn’t want to just say no either, so it worked on a few fronts.

I’m sending out my resume again and seeing what’s out there. I’ve been doing it some in the last year but nowhere near seriously.

But that’s not the part that freaks me out the most, although it is daunting.

What will I do with my free time?

I’ve had projects on the backburner for years, but is it time to give them more attention?

That would require some shifting, for sure.

Should I pursue a career based on filling someone else’s shoes or should I continue to forge my own path?