Showing posts with label reader appreciation. Show all posts

A few months ago someone emailed me about the blog, asking me about how I got started and where the ideas from posts come from. She wasn't someone with O.I. and doesn't have a child or even a friend with O.I. - she was just another blogger who was interested in the general blogging process. She said that I make it look easy, that somehow the number of posts I've made and the content that I cover seems vast and never ending. "Is it easy for you?" She'd asked.

No, it's not easy for me. Actually most of the time blogging is either really uncomfortable or really embarrassing for me. While I've been doing this since the spring of 2011 there are many days when I approach a blog post with thoughts of "oy I have to get all touchy-feely again?" Though I have gotten more comfortable with myself, blogging is not "easy" for me per se.

For those of you who have met me in person I tend to be a little more reserved, especially about my personal thoughts and feelings. Being the only one in my family with O.I. and not having met anyone else with O.I. until my second decade, there was no space for me to dump O.I.-related thoughts into except for inside my own head. So while some of you may think that these experiences are not unique to myself alone... for most of my life they were not only personal but they were solitary and private.
I have a close group of friends - they're the ones who I will drop my world of color-coordinated schedules to see. Often those are the same friends who chuckle at the idea of me having such a widely-read and public blog "Really Sandy? You have a blog? It took me only 100 questions to find out who you're dating, what's going on in your life, and the three projects you're working on." (I promise that my friends are really all wonderful and amazing people!) It has been said that there are people who are private, and then there is Sandy.

Being a private person I would much rather talk about things that don't have to do with me - things that are so far away from me that they're across several oceans, time zones, and things that I know maybe .05% about. This way I don't need to put myself out there, this way I can learn and absorb more information than I have to actually dispel. That is my preference when it comes to writing and communicating. It also makes me a humongous nerd who enjoys writing boring non-fiction papers about X, Y, and Z that may hypothetically impact 11% of the population on dot of land in the Pacific. I am not someone who is going to run for public office, I would rather be the someone who advises the public office on what to do and how.

This is why when I began the blog my posts took on a more "Advice-on-living-with-O.I." slant. I advised parents on how to travel with a wheelchair, I advised teens on how to get through high school, I advised classroom aids of students with special needs on what makes a great aide.. And then I quickly realized that I haven't really lived enough to be dispelling so much advice left and right!
But what do I have endless material on? My thoughts. I am a thinker, and probably way too much of one to the extent it can be more harmful than helpful. So I reach into those thoughts, and I practice getting uncomfortable and sharing those thoughts-I'd-rather-not-talk-about with a few hundred people I've never met. See? When I break it down like that you can see why blogging is not easy for me.
For an extremely private, library-book-nerd person yes -- that absolutely does freak me out if I really let myself think about it! Which is why I don't. Instead I think about each post like I'm talking to just one person in my mind. That reader is someone who has, over this year and a half process, helped me to see the value in sharing an aspect of myself no matter how convoluted and wordy it ends up being :-)

Basically this is only easy for me because the reader makes it easy. Thanks.

This was just some random shit I was born with. It was something to overcome, some foreign and external obstacle that I had to hurtle over - always and forever. Something to manage and deal with "as necessary," a chore to tend to, something to make sure I kept in line and in check: hidden away, neat and tidy. That thing was limited to being a medical rarity, it was a thing that was forever dependent upon others, it required adaptive equipment and constant check-ups, or check-ins.
A few times, this thing, even said check mate -- but I always managed to slip out from its traps, wiping my brow and smiling proudly at having beaten the odds, or been strong in the fight against it. This was a part of me that I was expected to defeat, to pummel and then carry-on with grace, insight, and wit. Because if I didn't I would have succumbed, been defeated, let that thing over take my life -- and we all know that's totally unacceptable. I didn't realize that failing could sometimes feel like flying too, didn't know that when I fell I wouldn't always break.

There were times when this thing drove humongous craters between those closest to me, and I thought that there would never be a way to fill those gaps. I didn't know about the soil I could pour into those bottom-less pits; didn't realize all I had to do was open my clenched-fist-heart for just a few seeds to sprinkle out, and watch the little sprouts grow. I would never have known that a garden could fill those holes, a bridge of memories and experiences that those others and myself could traverse, freely wander and walk through hand-in-hand. I didn't realize that it would be possible to connect.

It wasn't something that had rights, just needs and most of them were special needs. My natural and self-evident rights were limited to the pursuit of a cure, help, and inspiration. There was no history worth speaking of, no history that you couldn't trace in medical files and irregular growth charts, there was no past that hadn't already been depicted in the black and white of an x-ray. Its history had no civil component to it, it was just purely medical, or dutifully recorded in the bullet-points of faded I.E.P. plans. The past of this thing didn't include any action I took in hopes of changing its course, it was always just the hand I was dealt and that was that. No questions asked, move-along now, next in line please.

So, now that I've met you? You've changed all of the above and more, for me. It's not really just any of the above stuff that keeps me going and keeps me coming back. It's the more, part of the story. It's the what-else-to-come chapter, the chapters ahead that we continue to write together. Many rays of shine, and bucket loads of thanks to you.

Hello readers!

At the end of every month I usually write about the 'top post' for that month, but before I reveal February's top post I wanted to take some time to talk with you!

When I began this  blog I was just looking to connect with whoever was out there looking for tips to manage life with O.I. Needless to say that original mission has morphed into something much larger than just life with O.I. The purpose of my entries have begun to send a message that's about more than how to handle fractures, and it's about more than how young kids can tell their friends about what O.I. is.
The truth is that... well.. I'm not always sure exactly what that message is yet. I am still learning with each post that I make how to connect with people, how to create a community, how to write better, how to have an online presence, how to advertise, how to market, how to cater my message to different age groups/populations/needs.. and at the most basic level how to effectively help people break barriers. If at the end of the day the blog still serves that singular purpose, I know that I am still on target and still achieving my initial goals. Thank you so much for giving me that opportunity and for helping to achieve those goals!! For that reason alone I know I have some of the most incredible fans and supporters a person could ask for!
As the blog has grown and evolved, I have recently become acutely aware that whatever is happening with the blog is a change that is completely organic. I am not sitting around a table in some office talking with 12 (or even 3 others) about the direction the blog is going; and nor am I manufacturing some sales pitch for grants or corporate funding so the blog will continue. It's just us in this barrier breaking process - just you, me, and the community of people that we are among. With that in mind, I also wanted to take some time to say THANK YOU for helping the blog grow and change, even if no one is totally sure where we're headed or what this will bring about. It's exciting and I am truly happy to have each of you on board, especially as Perfectly Imperfecta is quickly approaching its FIRST BIRTHDAY in just a few months!!
Like I said before, the blog is about breaking barriers. But one of the surest things I have learned about that is this: without the support and backing of others, overcoming our challenges is damn hard. In other words, without you and your willingness to read my ramblings, and share those ramblings with your friends & families - this would not just be damn hard.. it would be impossible for any of us to do this!

Oh alright. I think that's enough o' that already eh? Here's February's top post of the month! "Nothing else I'd Rather Be Doing." See ya in March okay? There's a whole world of time out there, just waiting for us to get busy and make magic happen - let's hop to it!

*Each top post of the month is decided by you. Every month I post the most read, widely shared, and most popular blog entry.*