Hobbies In The Lobby

This is the last full week of WEGO Health’s Health Activist Writer’s Month Challenge.

Today is all about hobbies.

I don’t have as much time to indulge in hobbies these days however I have had more than my share thanks to lots of “down time” recovering from surgeries.

Typically I go for anything that I can do with my hands if I’m antsy. My room is littered with projects in various stages of progress. Every once and a while I’d pick of a sport like horseback riding and swimming, of course. The garage has been pretty well cleaned out of the rest of my sports related activities (thank God).

A sure sign of post-op boredom for me is wanting to wonder around the craft store and see what I can come up with. It usually ends up me spending at least $30 on stuff I wouldn’t have purchased it I wasn’t under the influence of the deep recesses of my own head (and the occasional painkiller).

It drives my family nuts, but they put up with the lunacy for a little while. It drives me nuts when it comes time to clean it all up after realizing that it won’t just disappear.

I was an amateur photographer for a while. I was one of the founding members of the photography club in middle school, because being the proverbial new kid and band geek just wasn’t enough.

I got into painting in high school. I was one of a handful of students that were featured in the school’s first student organized art show. Why yes, I was one of the student organizers too.

I was into collages and arts and craft kit type things for a little, but that quickly came and went. There’s actually none of that hanging around (a pretty definitive sign that none of that has lingered).

I’d love to sit down with a non-school related book and read but I’m afraid that that would quickly turn into nap time, not that there’s anything wrong with that.

Any free time I have for hobbies gets delegated to a movie, backlog of TV shows, or letter writing. It’s not very sophisticated or exciting but it’s me.

That is unless I have 3 or more days of no homework, shifts at work, or career commitments. Then I’m stalking travel sites for a good deal to take off, literally. Sometimes it pays off to have family making the next great migration south.

A Day Of Reflection

This is the last full week of WEGO Health’s Health Activist Writer’s Month Challenge.

It’s good to reflect every once and a while. However I finished my first semester to lay formation a few weeks ago so I’m a little reflected out right now. Plus I’ve been watching a good portion of the Boston Marathon Bombing coverage, even though I’ve done my best to avoid as much as I can, so I’m a little numb. I wasn’t even there and I can’t keep watching it without, crying, yelling, or wanting to punch someone’s lights out.

So you’ll have to forgive me if this reflection is as deep as a kiddie pool.

As horrified as I was (and am) that someone would turn one of Boston’s greatest days into one of the worst I was also thankful that it did happen in Boston and not anywhere else. There are a lot of hospitals in Boston and in surrounding towns, not to mention that people come from all over the world to receive medical care in Boston. As odd as it sounds if something had to happen I was glad it happened in Boston, most places wouldn’t have handled it as well.

Make no mistake; I’m still mad at the marathon bombers. I doubt that will ever go away, or dull. At the same time I couldn’t be more proud of the city.

I have more than your average “New Englander pride” when it comes to Boston.

Boston helped me get my life back. I had no doubts that it would continue to do the same for countless others.

No journey is without bumps or the occasional setback but nothing good comes easily. But if anyone can do it it’s a Bostonian (whether born and raised or transplanted). I definitely picked up some Boston traits from spending so much time there, and I’m a better person for it (I think).

I’m so happy that I chose to have surgery in Boston, and thankful that everyone was more than willing to take a chance on me. I’m 100% positive that I would be in a much different and probably not-so-great place right now if I had gone anywhere else.

I’m also thankful that every time I’m in Boston I feel like I’ve come home. The only time I ever felt like a tourist in the city of Boston was dung my first visit, but even that didn’t last very long.

In the last 4 years I’ve had more than one opportunity to transition medical care closer to home. I’ve politely declined at every opportunity (even though wasn’t the original plan). Something would have to be so good that I just couldn’t pass it up for me to change my mind now.

My hope for Boston is that its darkest day is left behind and it’s all icing on the cake from here on out.

I hope I can get out of my own way just long enough to learn a thing or two from Boston.


From A Want To Be World Traveler

This is the last full week of WEGO Health’s Health Activist Writer’s Month Challenge.

Next time I post for 2 months straight I really need to plan better. I feel like this this year’s HAWMC is a rerun of last month’s posts related to CP Awareness.

Thankfully though there’s enough “wiggle room” in the HAWMC prompts to make this travel post different than the last (but on the not-so-off chance that I’m wrong just pretend).

If I could travel anywhere in the world I’d probably choose to go to China.

If you asked me the same question a few years ago I would’ve given you a more typical answer like Australia or India. But thoughts change, especially when you get involved in child sponsorship.

Around the time I became intrigued with the special needs community online I was also reading a lot of adoption blogs. I don’t remember why but I was immediately drawn to the community, even though I’m still nowhere near that point in my life. It didn’t take long before I discovered that many of the families I was reading about not only adopted multiple children but sponsored children as well.

I figured if I couldn’t adopt a child I could sponsor a child. I had paid off my undergrad loans and it was only $30 a month. It was only 1 extra shift a month, completely manageable. I was looking at it from the money prospective.

It didn’t take long before I fell in love with China itself.

I’d love the opportunity to see the country I’ve fallen in love with.

However I have a few reservations about it. How could I not?

For one thing I start to lose my grip on reality if I’m at 32,000 feet for longer than 2 hours. A flight to China is significantly longer than that (although it would be in a bigger aircraft so there’s a chance I’d fair better).

Almost all of my air travel experience is based on shorter flights, or less than ideal experiences on longer flights. I don’t have it all figured out, but I think I fair better than most people. I’m happy for that, for myself and what I can share with others.

There’s also the issue of being a disabled person visiting China. Attitudes have changed since the Olympics BUT I’ve heard they haven’t changed enough, so I’d do my research before I got there (as should anyone else regardless of ability).

I’d make sure to have all my “ducks in a row” before I left home. Any medication I might need would be carried on my person, along with any relevant paperwork. Clothing would probably be the last thing I’d pack.

Traveling anywhere with a disability is a challenging experience, no matter how many times you’ve done it. Do your research. Make a plan. Stick to your plan but be flexible. Don’t forget to bring your most positive attitude, you’ll need it.

Lesson Learned, The Hard Way

This month I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge.

I’ve learned a lot of lessons the hard way (if you want my professional opinion).

Not only was I the kid who touched a hot stove after being told not to; I also jumped into a pool without flotation or supervision, and more than once even. I guess you can say I prefer to learn from firsthand experience rather than learning from others.

Although I wonder if that’s really a bad thing, considering I didn’t have any CP-related role models growing up.

There seems to be this one lesson I’ve learned more than once (just to be sure that I’ve gotten it down) is accepting help.

I hate asking for help, as do most people I believe. I’ve had so many less than positive experiences with assistance that it takes a lot for me to actually ask; even if it’s from someone I know and trust.

I will also turn down help when it’s offered, even when I know I need it (and badly).

It took almost flunking out of school, transferring to another school, and very persistent and skillful student support staff, to get me to accept help during college (although in my defense, can you blame me considering how the 1st attempt went).

Luckily I haven’t had to relearn that lesson in such a hard fashion since, thanks mainly to the aforementioned support staff; however I have had a few reminder experiences since.

I promised myself that I would never repeat that process ever again, and lucky for me I haven’t needed to.

I wish I could tell you that I wish the whole thing never happened at all but the truth is I’m (somewhat oddly) thankful for the whole thing. I needed that lesson a lot, and it has made communicating my needs with others easier, at least sometimes, and without embarrassment most of the time.

I still hate asking for help but accepting help if the offer is on the table is easier.

How do you feel about asking for help? Do you find it easier to accept help if someone offers to assistance?

If you offer someone else help and they decline are you offended? Because that happens just as often I suspect.

5 & 5

This month I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge.

Living with Cerebral Palsy gives you a laundry list of challenges so picking just five challenges that I have due to CP isn’t hard, picking which five is proving to be more difficult. Ideally I’ll pick 5 challenges that will give you a semi-complete picture of living with CP.

In No Particular Order Challenges Of Living With CP (the very abridged version)

“Overthrowing” people’s preconceived notions: One of the biggest social pitfalls of limited knowledge of CP is that people have seemingly endless preconceived notions of what living with CP is or what it looks like. People are often shocked that I have CP for a variety of reasons (I can speak clearly. I graduated from college. I can live independently…….). It can get frustrating to know that peoples’ knowledge is still so limited.

Red Tape: This one is probably painfully obvious to health related communities. One of the great ironies of living with a disability is that there is help out there, but it’s very selective and somewhat limiting. I’ve often found myself questioning if “all the help out there” is really worth it. After all someone (or thing) can’t help you in the way a way that you require help, can it really be considered help?

Getting Older: (Notice I didn’t say growing old) CP is a kids’ condition, but guess what happens to kids? THEY GROW UP! So CP is really a disability that effects all ages. Unfortunately the world hasn’t caught up to this fact yet (further complicating my first 2 points). I’ve been very fortunate in finding practitioners who are willing and very capable of caring for the over 18 population of CP; although most are trained in pediatrics and can speak fluently in kid and adult terms.

Starting Over: I was once asked if I had anything to add to a doctor’s definition of CP; I looked the resident dead in the eye and said, “It’s like not knowing what body you’ll wake up with in the morning.” While this example is a little on the extreme side it’s fairly accurate. There are days when I can’t do (or do as well) what I was able to do the day before.

Managing management: CP affects everyone differently so there’s not a “one size fits all” plan for managing it. I prefer to have more than one practitioner to have a more diversified management system. However it does have pitfalls. Sometimes it feels like you’re choosing sides or that no one has an answer. Managing your management is just as important as what goes into the management.

5 Victories In Spite Of CP (the short list)

“Overthrowing” people’s preconceived notions: As annoying as limited CP awareness is it can also provide lots of opportunities to “show off.” I’d rather show people what I can do (have done) with Cerebral Palsy before dispelling their misconceptions. It’s a more positive experience, from both sides of the conversations. They’re usually small victories, but victories none the less.

Starting Over: As obnoxious as it is to not know how your body is going to behave (or not) the next day it does have its benefits. Every day is a new day, in a sense, so there are days when your limbs cooperate more with your brain than they did the day (or week etc.) before.
Ingenuity: Living with CP practically requires it given the various physical limitations one can face on a daily basis (my lack of height doesn’t help matters either, but that’s personal). The world doesn’t adapt to people with disabilities so you have to constantly adapt to the world, a creative mindset helps a lot.

Mobility: One of the biggest blessings of CP is that higher functioning individuals have pretty good mobility, endurance is another issue. If the conditions are right and/or there’s proper planning mobility can be the least of your worries, and maybe even fun.

Opportunity: A seemingly common statement in the SCI community is, “I’ve done more in a chair than I’ve ever done out of a chair.” While I can’t speak to this statement directly I think I can relate to the sentiment behind it. I think (although one can never be sure) that I’ve been able to do more in my life with Cerebral Palsy than I would be able to do without CP. For all I know I’d have to seriously discern a vocation (which is pretty much Catholic for “mission in life”), instead my vocation found me, thanks in part to CP. How many people can say that?