thinking

Doctor: You mean there’s a difference between being happy and thinking you’re happy?

Diana: People who think they’re happy just haven’t thought about it enough. People who think they’re happy are actually just stupid.

Next to Normal, by Brian Yorkey & Tom Kitt

This quote is rather crass, I admit, but I was thinking about this show the other day and remembered it.  This show’s treatment and examination of chronic illness, although fictionalized and heightened for maximum dramatic impact, made a huge impact on my when I first saw it in 2009 at its first preview performance in New York City.  I am the world’s worst critic when it comes to disability literature/art (I can’t help it, there’s so much bad stuff out there!) but this moved me like few things have.

I thought about this quote recently while having a blogging crisis of conscience.  I was feeling bad that my blog seems to be a series of rather disconnected and slightly morose ruminations.  It’s not the happy, inspiring blogs I read from others. And I don’t aim to do that, either.  I realized I don’t share the good things, and I’m not sure why. 

I didn’t feel a burning desire to blog about the ride I had last week on the amazing horse I have the privilege of riding where we figured out the difference between bend and flexion and how to use both (and as I write that, it makes no sense if you’re not a horse person – maybe that’s why!) I didn’t write about my new apartment, new-ish job, or my excitement about getting my own washer dryer. I will probably write eons about my new dog next month, at least I plan to.

I guess that’s what I’m trying to get at, that I am a chronic over-thinker and this blog is as good a place as any to think stuff through. I can’t, after all, completely torture my friends and family with entirely too much existential angst.  And the more I think about things, the less clear-cut they become

So no, I don’t quite believe Diana’s assertion here (after all, she is speaking in a deeply troubled state), but I can certainly see where it’s coming from and find it strangely liberating to identify with this searching she does.

The “what if’s”

Warning: not a feel-good end of the year wrap-up post. Sorry about that, too much to think about and synthesize right now.

What if I had been born a century earlier, heck, even 60 years earlier? What if I had been born in another country entirely? Would I have survived? Would I have been operated on? Would I have had access to education? To doctors? Sometimes this spiral of what if’s is overwhelming and heartbreaking.

It hit me today when I read about the possible ban on adoptions by American families from Russia in retaliation for a bill the US passed to make it harder for Russians with human rights violations to enter the US (which, quite frankly, makes perfect sense to me).  Many of the children being adopted out of Russia right now have special needs, physical disabilities ranging from cleft lips and palates to spina bifida and developmental disabilities such as Down syndrome.

I don’t know what the cultural climate is in Russia, but I believe it is very difficult for many families to raise a child with a disability. There is no IDEA, no ADA to guarantee basic rights for all citizens. Due to poverty and other issues, many children with disabilities are placed in mental institutions and essentially left to die.

This was brought home to me today when I watched a CNN segment on a decorated US Paralympian, Tatyana McFadden, who was essentially left to die at age 7 in a Russian institution until she was adopted. Clearly not all children will go on from this situation to be high-level athletes, but still. It illustrates just how much of a change can happen.

Sometimes I wonder how many children out there have/had Moebius syndrome, and never had a chance for a normal life.  How many are still out there? I was struck last year when a couple adopted an adorable girl from China, who turned out to have Moebius. How many other children like Hannah are there, children with Moebius syndrome who never have the chance to reach their full potential?

Sometimes I get entirely too idealistic and wonder what I would do if faced with the option of adopting a child with Moebius. Part of me just thinks that’s just way too much, but part of me wonders how I could ever say no, how I could ever deny someone with potential the opportunities I have had?

I’m not a particularly political person, I’m passionate about a few things but not necessarily politics in general.  But I do hope something can be worked out in this instance, something that helps children with disabilities find families in whatever country they can.  It’s not easy either way, but I hope for the best outcome for these most needy children that allows them to succeed and thrive.

So, what if? There are so many what if’s in, well, anything… but we can only do our best to translate these into action, into networking, into awareness. Ultimately, I think that’s the only way we as a global society can change the way people with disabilities are treated and respected.

Sometimes

Sometimes I do incredibly stupid things I know I shouldn’t do, all in the name of being independent. Last week, after I nearly scalded myself (note to self: stairs + hot water + open cup = not smart) I realized I need to be more practical.

It’s strangely awkward to talk about how Moebius syndrome effects me physically. Maybe it’s because it effects people so differently that I don’t want to get people worried even when there is a good chance they won’t have other physical issues.

But for me, my balance is pathetic and coordination even worse. I have chronic pain in my legs. (Yet another reason why riding horses is the best thing ever: works on all of those issues, and you don’t have to stand on your feet to do it!)

So I have to be careful and smart about staying within my physical limits. Which is hard. It’s not fun to ask people to carry stuff for you, or realize you can’t actually walk far in those amazing shoes you bought. Not to mention that being in pain really, really is not fun.

But then I realize that there really is no other alternative, is there? There’s a certain point where you have to let go of those ore-conceived notions of what you should do and just figure out what works. More on some developments there (of the 4-legged variety!!) soon.

What we don’t talk about

Watching the coverage today of he Connecticut elementary school, I started thinking about what we as a culture don’t mention enough: mental illness.

As things come to light about this horrible situation, mental illnesses will probably be both the cause and result of this tragedy. Mental illness is still taboo. Something not to be discussed publicly.

I am guilty of this, too. I avoid “those” sessions at the Conferences. I feel so selfish admitting this, but I sometimes don’t know if I can, or want, to deal with other people’s issues when I am still dealing with the ghosts of my own. Is that wrong of me to say, or think? Probably, but it is the truth.

Where do we go from here, both as a smaller Moebius syndrome community and as a larger culture? It is almost cliche at this point to say that we need to remove the stigma of mental health, but it is true. We need to improve access to mental health care for all people. I owe much of my success to an absurdly expensive therapist, paid out of pocket. Many people are not as fortunate.

We need to acknowledge that living with a visible difference can and does lead to unique issues, but not necessarily. And those issues are not insurmountable. It can, and does, get better.

I just wish these tragedies didn’t have to happen for these issues to come to light.

There’s a fine, fine line

I have a few different medical things I need to get looked at.  And I’m dreading the process of doing just that.  Not even dreading the appointments, etc. themselves (well, except for the dentist – that’s an entire post in itself).  Being medically complicated is, well, complicated.  Nothing seems as cut and dry as it should be.  I like my specialists, they at least seem to have some idea of what’s going on and what their part is.  This is good, but I miss the days of pediatrics all being in one building and who all seemed to work well together.  My pediatrician was also my geneticist (and currently volunteers at the hospital! I ran into him last year when I was going in for an ear infection…), and knew all my other specialists well.

Now it kind of seems like the specialists all kind of know each other, but the internists don’t.  Which I guess is fine since my specialists are more important to me ultimately, but it can be annoying.  Especially annoying since my HMO doesn’t give me the option of making specialist appointments online (seriously, who’s going to make too many doctor’s appointments?!).  Not that I necessarily mind calling but it’s just funny that we’re not trusted to actually make our own appointments.  Had a hilarious incident a few year where some confused employee tried to tell me that my doctor didn’t exist (turns out I needed to call the Eye Department directly for that one, who knew?!)

So I kind of feel, as a reasonably well-informed medical consumer who has unique health care needs, that I walk a fine, fine line between informed and being a pain in the ass.  I was raised as an active participant in my own medical decisions and try to maintain at least a basic level of understanding of what’s going on and what I should be doing.  But I also don’t want to be that patient who all the doctors are talking about around the water cooler…

(And, in case you were wondering, the fine, fine line reference is from Avenue Q)

“I was here”

I wanna do something that matters
Say something different
Something that sets the whole world on its ear
I wanna do something better
With the time I was given
I wanna try to touch a few hearts in this life
Leave nothing less than something that says
I was here – I Was Here, performed by Kristin Chenoweth

With this being Thanksgiving, I guess I’m grateful for the opportunity to explore how this will happen. I am thankful that I have the resources, both emotional and otherwise, to live my life how I want to.  Needless to say, I am thankful for family, friends and various furry creatures who impact my life in a myriad of ways.

Nevertheless…

I still struggle with the should-haves, would-haves, should-I’s of life.

I wonder if I should be more socially active, more directly involved in causes… if my completely corporate/academic jobs are a cop-out from dealing with the tough stuff as a person with a medical condition.  And yet, I like the freedom of not being defined by my condition.

So I think the answer is that I’m still figuring out my place in this complicated, convoluted series of communities.  I will find a way to say “I was here” in my own way, sometime. Maybe this writing process is it, after all.

Moebius syndrome and fashion emergencies

20121120-202655.jpg

I have more meaningful posts I will write. But for now, some levity:

That rare moment when having Moebius syndrome equates to a fashion emergency.

I don’t walk around saying “gosh, my right leg is so much skinnier than my left leg” but every so often I am reminded about that. Usually when trying on or wearing knee-high boots.

But these sweatpants just hang/don’t hang in precisely the wrong way on me so I end up continually trying to make them even. Luckily they’re soft and I otherwise like them, and I’ll forgive looking completely disheveled for hanging around.

I learned my lesson: no more three-quarter length sweatpants with tight bottoms for me!

Defining oneself

Defining oneself

I saw this photograph on Facebook today, and it made me think. I’ve vacillated between all the extremities on this issue in the last 20 years: between EVERYTHING in my life being somehow a result of being born with Moebius syndrome to everything being a result of other things.

I can’t say I’ve come to a proper, concise conclusion (even now). No doubt the fact that I happen to have been born with Moebius syndrome is part and parcel of a HUGE amount of other things that influenced who I am today – from family illnesses to found passions to educational experience. And I can’t deny that having Moebius influences these other experiences.

I guess it comes down to me questioning why being defined (in part) by something is a bad thing at all. It is reality. It is nice and all feel-goody to say all the PC things about not being defined by your condition, and I’m sure I have said all those things at one point in time, but maybe it’s best to take back and own the concept of defining. That way I can truly define myself.

Review: Falling

Falling is an apt metaphor for life with challenges of many types. It is also the name of a new play, being presented Off-Broadway and regionally, about a family.

It presents the unique challenges of being a family affected with a condition such as severe autism, and raises powerful questions and doubts that need to be discussed.

For me, art is so incredibly powerful because we can explore so much with it. Falling made me squirm. It made me sigh with relief, then gasp. It made me THINK.

That is what great art is. It asks tough questions that are uncomfortable to answer. It makes you doubt yourself and what you think you would do. It makes you cry.

Falling is a powerful and much-needed piece of theater. I highly recommend it for mature audiences interested in family and disability issues.