Moebius syndrome – Page 5

“I’m Sick of Being Sick!” Post

I am sick of being sick. I am sick of being used to being sick. So… this is just a whiny health-related post!

I’ve had respiratory issues my entire life, probably stemming from muscle tone issues. Most young children who die from complications from Moebius syndrome have respiratory issues. Unfortunately not that much research is being done in that area… hopefully more is done soon.

It went un-diagnosed for many years, where I would wake myself up coughing as a young child because I couldn’t breathe. Luckily I did not need any serious intervention beyond a changing medication regimen (now a pill – Singulair is a miracle drug for me! – and an everyday inhaler, plus an emergency inhaler). Usually I’m okay.

Until, that is, I get sick. I’ve been sick since Monday with a respiratory cold and am just done. Sick of that annoying light-headed due to lack of oxygen feel, sick of coughing, worrying about being able to breathe enough on Sunday’s fundraising walk, and really really sick of phlegm!

I think about perspective and feel a little guilty with this whiny post, but sometimes it just helps to complain!

In other news, my dog is being super-helpful for me when I’m sick!

Changes

“I’m through accepting limits
’cause someone says they’re so
Some things I cannot change
But till I try, I’ll never know” – Defying Gravity, Wicked

Something has happened that I honestly didn’t think was possible: I can move the left side of my mouth. I can smile more evenly, with control over it. I still am not entirely sure what to make of this new ability!

I honestly did not entirely believe Sara Rosenfed-Johnson when she said this might be possible from the exercises she was giving me. I could believe her with lip closure, with bilabial sounds, with jaw strength… that seemed attainable.

But smile movement on my left side just seemed…unattainable. When I decided as a young teenager that the smile surgery wasn’t for me, I thought I had lost any hope of having a full smile. And I was okay with that.

But this is pretty great now that it has happened!

I’ve been doing exercises on and off (sorry, Sara!) for the past 6 or so years, working on different things. They started with jaw strength, then moved to lip movement. They’re great for adults to do on your own (maybe minus the rather creepy Casper the Ghost vibrator next time!) because they are easy. You can double-task, I spent a lot of time a few years ago reading the New York Times Arts section while doing exercises. And at least for me, you see results.

I didn’t actually hate speech therapy all that much most of the time as a child (private-public school speech was hit or miss)-I liked to talk, and getting an adult’s undivided attention was not bad). But doing specific exercises makes a lot more sense as an adult.

So those are my experiences so far. I’m interested to see what is in the future for me.

(Note: These are my individual experiences, I am not paid in any way by TalkTools to promote their product.)

Healthy journeys

So everyone everywhere happens to be posting about health, body image, reconstructive surgery… and because I am trying to take my mind off post-interview/waiting to hear stresses, I’m going to try to put some of my current thoughts into semi-coherent words right now.

I don’t remember ever not having a vexed relationship with food. I am actually rather amazed I never developed a full-blown eating disorder. I have all the hallmarks for one (over-achiever control freak, trauma, etc.) Somehow, thankfully, I always have managed to avoid one.

A therapist once pointed something out, and gave me a bit of insight into my food issues: when I was born, they couldn’t figure out how to feed me. So my first, unconscious memories of food are challenging. When I was a child, I was self-conscious about how I ate. So, another strike against me having a semi-normal relationship with food!

Given that, I try my hardest to not be too neurotic about food and eating. Luckily for me, I pretty much only can eat healthy foods (basically, fruit and veggies are the only things I can eat and guarantee not feeling bad after, depending on the day). And coffee. When in doubt, I get a latte and call it lunch. Is this healthy? Is this physical, or psychosomatic? Who knows! I figure since it’s working for me now, I will just deal with it. (I wonder if it has something to do with low muscle tone? I have never seen a GI well-versed in neuromuscular disorders, so I don’t know.

On to exercise. I have a love-hate relationship with walking – I love to do it, my legs… not so much! For me, the most challenging everyday parts of Moebius syndrome is not at all the facial pareisis – it’s my vision issues and chronic pain. I got a dog in February, and if that isn’t good enough motivation to walk, I don’t know what is! It’s hard not to enjoy a leisurely stroll when you have a happy dog beside you. He also helps take the strain and pain out of everyday life, since he’s trained to pick stuff up for me and otherwise help me. I’m also all about finding ways that I can exercise within my physical limitations. I love mat pilates and yoga, they’re great for core strength and you do at least half of it sitting down! And riding horses is of course perfect for someone who can’t walk a lot, it’s an ideal sport for me! When I have the chance, I love to swim… just need to find a pool around here without absurd dues!

But I think, like everything, living healthy with a chronic condition is all about finding your own way in the world. Nobody’s journey looks the same, whether it is navigating surgical options or learning to take care of your body.

So what does this have to do with my third (very rough) point here, reconstructive surgery? Just that we need not point fingers either direction. Every individual, family, parent is on their own journey here, and the outcomes may look very different. It’s so easy to be judgmental and critical and confrontational, but I always try to remember that their experience is very different from my own because we are all individuals. I remind myself of that constantly. I hope I succeed.

And just to end, an image that always reminds me that there are no excuses:

Wordless Wednesday (actually, word-full)

This video literally made me cry.

As someone who went through 10+ years of speech therapy due to Moebius syndrome (facial pareisis), I can’t tell you how much I would have benefited from having a facility dog there! I actually didn’t mind my private speech therapy sessions, usually (I was lucky to have a few really good therapists). But doing it week after week, year after year gets a bit old.

Speech is also funny when it comes to my dog. Cassius understands me perfectly. I actually don’t get mis-understood that much anymore (I think thanks to all that TalkTools work I did), but when I do… I can’t help but think “hey, if a dog can understand me… you should be able to figure it out!”

I know, not particularly nice. But I can’t help myself since I now have a yellow, furry, slobbery guy who understands me perfectly.

Inside / Outside

“Penny Loker’s birth defects disfigured her face, but neither affected the person she is on the inside.”

CNN’s profile of a woman born with Goldenhar Syndrome leads with this statement. And once again, while I applaud their effort and heck, even the fact that they’re spotligting facial differences in the first place, this insistence annoys me to no end. Why is it that we as a society cannot conceptualize being a successful, functioning person while at the same time being profoundly influenced by something? It’s an all or nothing scenario, which sells everyone short. It’s just interesting to think about when reading things written about and by people with disabilities and medical conditions.

More often than not, unfortunately, society seems to still fall into the tropes of the heroic disabled person who rises above everything and succeeds. While some people find power or validation in that narrative, I always find it rather mortifying when someone attempts to apply it to me. There is nothing heroic or special about the way I live my life with my medical condition. I know that sounds kind of blunt, but it’s just how I feel. It just inherently rubs me the wrong way due to my history.

So basically, I applaud Penny Loker for contacting CNN in the first place (seriously, check out the article to get the back story), but I wish the article itself hadn’t gotten too wrapped up in the usual language about disabilities.

In other Inside / Outside – related news, Cassius and I were successfully re-certified inside Coddingtown Mall (yet again…). The Assistance Dogs International certification is good to do because it sets a benchmark for all assistance dogs, not just CCI, and it was nice for me to see that we were still good skill-wise. We did goof and Cassius ate a piece of food in the 3rd food drop (seriously! 3 of them!) I slacked off and he went for it, but as long as you do something about it and correct them for it, luckily that doesn’t make you fail! Cassius loved playing outside in Gittinger Park on the CCI Campus, a massive dog park only open to graduates, puppies in training, change of career dogs and employees dogs. We weren’t able to go there after graduation in February, so it was fun to see Cassius romp around with the other dogs for a bit. Who knew he could run this fast?

And lastly, a few adorable inside/outside dog stories for the weekend. Yesterday, I did my first Whole Foods run with Cassius. He was perfect, although a little overwhelmed by the soap smells in the Whole Body section. His nose was going all over the place. On our way out, I heard a mother telling her toddler that he was a “smart dog” – I just thought that was adorable. And today at the Farmer’s Market, I encountered a very curious toddler and his mother. Since Cassius and I were sitting in line, I told the boy he could pet him. He gave Cassius a few pats on the nose, and Cassius ate it all up with a wagging tail and a few licks. Both boy, dog and me were very happy with that encounter.

“alone we are rare, together we are strong”

Rare Disease Day is February 28th! It’s a valuable day because the strength of the cumulative rare disease community is huge,

I felt the strength and resilience of people facing all different medical conditions when I was at CCI, and it was a powerful, transformative experience. It reaffirmed for me that I need that community in my life in some way, probably more through CCI than through other groups at this time for some tough personal reasons. But I realized I do indeed need it to center myself, to reaffirm my place in this complicated world.

The motto of the National Organization for Rare Disorders is “alone we are rare, together we are strong” and I believe it’s more relevant now than ever before. Events for Rare Disease Day range from just wearing jeans or a jeans-colored ribbon to show support to large Capitol Hill lobbying events.

For more information on Rare Disease Day and how to get involved, see:
http://rarediseaseday.us/

Homepage

(and I thought this photo was a perfect background for the message, as who cares more about you – in their own unique way – than a really adorable dog?)

…Don’t forget to smile

“For people who suffer from Moebius syndrome, which is the inability to move facial muscles, they often explain how they have to tell themselves to be happy or sad…The happiness or sadness doesn’t occur naturally to them. They are intellectualizing their feelings.” – Dr. Eric Finzi

I came across this gem today, and I guess it would be irresponsible of me not to delve deeper into it. I never understood this research finding (that has been handily refuted by my friend Kathleen Bogart, a psychologist who happens to have Moebius syndrome). If anything, I always almost wonder if I’m over-emotional in response to having limited facial expression. I am passionate, strong-willed and often too hard on myself. Definitely no one has ever accused me of lacking emotion in any way, shape or form! Do I intellectualize my feelings? Sure, but then again I pretty much intellectualize everything! I honestly think that has more to do with my upbringing and schooling than the fact that I have limited facial expressions.

And, for what it’s worth, people tell me I’m very expressive even with partial pareisis. So I think we just intrinsically learn how to be expressive in other ways, and I don’t believe that’s a negative or problematic way to live.

Some pretty amazing Moebius-related craftiness

I am pretty artsy and craftsy, if I do say so myself. I’m a big fan of sewing/knitting/anything in that realm. I was that kid at camp who would make 20+ lanyards in an 8-week period.

So given that, I was excited when “Weekly Challenge #103: “String Theory v.XXII – Moebius Syndrome Awareness“ popped up in my Google Alerts this week, right after Moebius Syndrome Awareness Day.

The blogger’s challenge was to create something incorporating the Moebius Syndrome Foundation‘s symbol.

She received some very creative and inspired designs, here are a few of my favorites:

http://leeanniszentangleiing.weebly.com/uploads/3/9/7/5/3975698/5270043.jpg?348

http://katydidsworld.files.wordpress.com/2013/01/img_2941.jpg?w=298&h=300

I just thought this was too creative not to share! Makes me inspired to make a scarf or something…

#MSAD #Inspiration

I feel somewhat obligated to post something today, it being Moebius Syndrome Awareness Day and all, but I am strangely lost for words right now. I can’t quite articulate anything coherent enough about what I’m thinking about (well, the part of the many things I’m thinking about that have anything to do with Moebius syndrome, that is). I’ve tried all day, but I’m afraid I have no great insights or thoughts today.

A singer I follow on Twitter (yeah, doesn’t that sound awkward?) has a quote on their profile that “We sing because we can’t speak anymore.” Fiction and poetry and song lyrics often speak to me, or say what I would like to say, so much more strongly and eloquently than I ever could. So here are a few lyrics that inspire me and that describe different parts of my individual experience with Moebius syndrome.

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.