To Be or Not To Be

To Be or Not To BeI was thinking this morning about the different ways we can view and face our disabilities and what the “best” way to do that is. In my mind, there seem to be 2 schools of thought on the topic. School #1 calls for accepting that we’re different and embracing that we’re not like everyone else. School #2 calls for not considering ourselves to be any different than anyone else and to accept that we’re just as normal as someone who doesn’t have a disability.

There’s obviously no right answer and I think each of us has to decide which mode of thinking is the best for us in our individual lives. I find myself kind of ping ponging between the two. I think that people with disabilities should be considered the same as everyone else. Just because we have different abilities, doesn’t mean we’re different as people. But at the same time, I’m not sure that’s something I would ever be able to accept about myself. I don’t know that I could ever really consider myself exactly like everyone else. That could still be from insecurity or not feeling like enough but my mind seems to identify more with the idea of being proud to be different.

Even though I’m very much a rule follower and for most of my youth could only be described as a “goody goody” (but proud of it!), as I get older, I’ve started to develop more of a rebellious spirit. Not a law breaking kind of rebellion but a “damn right, I’m different” kind of a spirit. I’ve always identified greatly with people who society views as different or have had to overcome a tremendous amount of obstacles and I know for a fact this is because of my own circumstances. And it’s one of the things I’m most proud of about myself. I’ve gone through waves of wanting to dye my hair pink or date a guy with a bunch of tattoos and piercings just to shock people. Just to stand out (something that terrified me growing up). I’m not afraid to be passionate about causes that other people might not understand or be passionate about. I’m proud that I believe what I believe, even if it isn’t what the majority of the country or even some of my family believes.

So I guess what I’m trying to say with that laundry list is that disability aside even, I basically already consider myself to be different. And more importantly, I’m proud of it. Do I always love my limp and my physical limitations? Of course not. Do I hate how difficult it makes dating? Absolutely. But even with all the tears and frustration that come with it, I know that being born with MD has helped shape the person that I am today.

All this means I guess I identify with School #1. That being said though, I think it’s society’s job to see people living with disabilities under the scope of School #2. We’re people just like everyone else. Sometimes we require special accommodations yes and that needs to be addressed as well, but we shouldn’t be considered this subset of society. We need to be included in the overall whole of it instead. I think that’s the only way any real change can happen in the way disabilities are viewed all across the world. But in terms of our individual views about ourselves, I think it’s more than OK to say “hell yes, I’m different!” That can be applicable to people of all walks of life too.

Maybe this is all contradictory and I’m not making even a bit of sense but those are my thoughts on the topic. Would love to hear yours!

Why We Should Travel

Jackie:

This is a blog that I posted on my other/new blog, The Accessible Traveler. Though it’s definitely very in line with the focus of that blog, travel has always been a great source of inspiration for me so I thought it was fitting to share it here as well.

Originally posted on The Accessible Traveler:

You've never seen blue until you've seen the Hawaiian ocean                                                 You’ve never seen blue until you’ve seen the Hawaiian ocean

My original intention with this post was to tell you all of my reasons why I think travel is such an important thing for all of us to do (differently abled or otherwise). But then I came across this article and it summed up everything I wanted to say perfectly.

13 Amazing Things Travel Does to Your Brain

I generally take issue with anyone/anything telling me I “should” do something so I try not to do the same for others, especially when it comes to something that can be really difficult and stressful for people who are mobility impaired or differently abled. The reality is, travel is one of those things that can be extremely difficult…

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Putting the Arr in Hard

Skinny JeansLately there’s been a singular struggle in my day-to-day life: seemingly easy things being hard. I literally do the opposite of “don’t sweat the small stuff” and I sweat that the most. It’s not like this is something that’s all of a sudden come up. It’s always been a part of my MD. The funny thing is, I don’t stress or get frustrated by the big stuff as much usually. It’s dropping stuff on the floor and having to strain my muscles and my back to bend over and pick it up that bothers me, especially when I’m attempting to throw something away, aim right over the trash can, and whatever it is still manages to land on the ground about 2 feet away. It’s not being able to grip things very well and spilling things all over me or yet again, dropping stuff. I can’t even get a pair of jeans out of my closet while holding on to a shirt in my other hand. It’s not being able to get skinny jeans off without having to sit down because I can’t bend my legs enough, and then having trouble getting a good enough grip when I do sit down to grab them around my ankles. Trying on jeans/clothes in a dressing room with no chair or bench? Forget it.

This is going to sound ridiculous but it sometimes feels like the universe is working against me when it comes to this stuff. I feel like it should know that I have MD and therefore, when I drop something in the trash can, it should go in. I should be able to hold on to stuff and never drop it so I don’t strain anything. Door frames that have been there for years shouldn’t get in my way and bump into me.

I’m so extremely fortunate to be able to do all that I can and I shouldn’t take that for granted. I do have some pain too but it’s still so minimal compared to a lot of other people’s. Maybe because I don’t have to struggle with the bigger things as much, that’s why I zero in on the smaller stuff. I think I feel like my body has betrayed me being born the way it is so every small thing I can’t do that I completely feel like I “should” be able to do is just an example of that. Fortunately or unfortunately though, this is the only body I’ve got. It’s the only one I was given and it’s the only one that’s going to get me through my years. I have to accept that, flaws and all. I have to accept that sometimes I’m not going to get everything in the trash can and that it’s ok if I have to sit down to take my skinny jeans off (seriously, why do I even buy those things?). I don’t need to be in such a rush all the time anyway.

Some things are going to be hard, that’s just the way it is. We all have things that might be harder for us than other people in life. Mine just happens to be this. It’s not a punishment. It’s not that life is out to get me or the universe trying to make it harder for me (no matter how often it feels like that), it just is. I let myself fall into the black hole of “what a shitty hand I’ve been dealt” too often. I need to remember when, a long time ago, I said I wouldn’t change being born with MD for anything. There’s nothing I can do about it anyway so why let myself get so worked up about it?

Old Home Movies

With mickey

Me, Mickey and My Leg Braces

I am extremely lucky that my parents live pretty close to me and as a result, I get to see them pretty often. I try to never take that fact for granted. This weekend they brought me some old movies my mom had recently put on DVD (Costco literally does everything). Being the nostalgia junkie I am (yes folks, not just an inspiration junkie), I watched all of them in one sitting.

Watching home movies is always a nice walk down memory lane but it can also be very bittersweet. I was such an enthusiastic, open kid. I was dancing in my chair at Chuck E Cheese at the age of 3, not caring even a little bit if I looked weird. I said pretty much whatever came into my head (as all kids do however endearing or offensive that may be). I was almost loud. I think it’s true of almost all of us but it made me kind of sad that I’d lost that. That I had let life and my experiences harden me and turn me into a different person than I was then. I think my life might have turned out very different if I’d stayed the way I was.

That got me thinking about all the dreams I had as little Jackie. How I thought my life would turn out. I think I’ve talked about it before, but I really had only one dream growing up and that was to have a boyfriend/significant other, whatever you want to call him. I loved fairy tales and all of the boycentric TV shows there were at the time. Being a teen and having a boyfriend seemed like the most normal thing a girl with a self-perceived abnormality could have. So as I sat there and watched these scenes of child me (I was adorable by the way), I admittedly got a little sad. I don’t think any of our lives ever turn out the way we plan them to, especially not exactly. But I feel like I had a relatively simple goal and I have yet to really achieve it. The worst part is it’s mostly my fault. I was too insecure. I was too shy. These days, I’m too closed off and too afraid. I had so many missed opportunities because of my own flaws. Because I didn’t stay that open, outgoing kid I was. There’s nothing I can do about it now of course and I know there’s a reason my life is the way it is now. But I definitely felt that pang of sadness not just for me, but for every child who grew up with a dream or goals for the life and for whatever reason, wasn’t able to achieve them.

The last thing I noticed on these home movies was how well I got around physically. When I was 3, I was still scooting around on my butt and not really walking all the time but by 4, I was walking. I had my limp but it was almost just more of a wobble. I got up and down off the floor like it was almost nothing and I sat on the floor a lot in general. I could even squat. I didn’t think I’d really deteriorated that much in terms of physical strength but watching that, I realized that I have actually gotten weaker and less able to do certain things. A lot of that I think is just more weight to carry around and to have to lift up with my not-so-strong arms but it was disappointing to see for sure.

It’s an interesting topic. Is there something we can do to prevent the hardships and disappointments of life from turning us into someone else? Is there a way we can stay that open, loving, even naive kid? Would we want to? Would I want to? I think I would. I definitely wish I could still get around as easily as I could back then. And I hope that little girl is still living in me somewhere, she’s just been hiding all of these years. Time to go in there and find her!

Daily Inspiration: Chris Anselmo

There’s a wonderful site on the internet called The Mighty. Its shares all kinds of wonderful, sometimes heartbreaking and empowering stories from members of the disability community. There was a post today by a guy named Chris, a fellow MDA Transitions blogger, that nearly knocked the wind out of me while I was reading it.

Chris wasn’t diagnosed at a young age like me with MD and his symptoms have started to show up gradually as a young man. So not only is he having to wade through the waters of living with a disability, he’s having to do it as a person who was born with a full level of strength.

I’ve mentioned falling in a lot of my posts. How it makes me feel, etc. I can’t even count how many times I’ve fallen, like Chris, and had people stare at me just like the little boy did in his post. In high school, I would fall in the halls and people would just walk around me, pretending they didn’t see me, like I was just another obstacle on their way to class. It still happens today. I’m still not sure which is worse: people staring or people pretending like you don’t even exist.

On that note, Chris mentioned something else in his post that really really struck me. With the increasing onset of MD symptoms, he said he’s had to accept that he can no longer be anonymous. Anonymous…if you would have asked me growing up the one thing that I could be if I wanted to, it would have been anonymous…invisible. I wanted people to stop staring at me (still do sometimes). I wanted people to stop noticing me and my limp. Stop noticing my skinny, bony frame. I just wanted to blend in like everyone else and I did whatever I could to try and accomplish that. Bought all the latest clothes, wore makeup, tried to straighten and flatten my beautiful curly hair as much as I could so it wouldn’t make me stand out more. I looked down when I walked, not just to look for obstacles I might trip over, but so maybe no one would see me. Maybe I would just become a unified blob with my surroundings if no one could see my face. I think a lot of people worry that they might become invisible in the world but if I could have been granted a superpower, it would have been to be invisible.

Then, as I got older, I started to embrace my differences more and more (after all, we all have our own unique things that make us the amazing beings we are). I grew to love my curly hair. I liked having opinions that were different than other people. I liked feeling like a rebel because I had a pimp limp and an extremely rare neurological condition. I didn’t mind that people were staring at me so much anymore. I have days know when I don’t even think about or worry if people are staring as I slowly pull myself out of a chair.

I still struggle with falling, can’t deny that. I still feel like it’s the end of the world and utterly humiliated when it happens sometimes. But I’m also extremely proud and happy that I no longer feel like I want to be invisible. Some days I kind of want to hide out, but I rarely ever want to shrink into the background anymore. I’m happy to shout to the world “I’m here!” in whatever way I can. I’m happy to be a unique individual with strong opinions on things and awesome curly hair. I’m not quite at the point of saying I love my pimp limp but I think I’ll get there someday. It might be one fall at a time…but I’ll get there.

Chris has his own blog at WordPress and it’s extremely thoughtful and well-written. Check it out here.

Crosswalk This Way

AbbeyRoad

For most people, I’m sure crosswalks don’t carry a lot of weight in their minds. It’s just another part of the day. Another way to get from Place A to Place B.

For me…crosswalks are one of my biggest fears. Why, you ask? Well for starters, ever since I was little, I’ve had a recurring nightmare that I fall in the middle of the street (in a crosswalk) and because I’m not able to get up off of the asphalt fast enough, I get hit by an oncoming car. Morbid, I know. A really unpleasant nightmare to be having this many years later, let me know tell you.

The thing about that nightmare though, is that it could very much be a reality. It could pretty easily happen to me. I know, the morbid meter is going higher here. Crosswalks are made of asphalt. Asphalt is often bumpy and uneven. This makes for very treacherous walking conditions. Treacherous walking conditions make the odds of my falling sky rocket. Falling means I will be on the ground with likely no way to get up unless someone is around to help me up. Being low on the ground means if I can’t get up by the time the light turns green for whichever cars are around me, they may not see me. I think you can figure out the rest…

There was one time I actually fell, not in a crosswalk, but in the middle of the street. I was crossing to go into an Albertsons and my worst fear came close to being realized. There was a car coming at me and I couldn’t get up. Thankfully they saw me and some nice people literally carried me out of the middle of the street (which was equally humiliating for me). One time in my lifetime really is pretty good odds but it was scary as hell.

So crosswalks are a bit of my nemesis you could say. I always approach them, ready to do battle. I walk slowly and carefully, never letting my eyes leave the ground should there be a rogue rock or bump in the asphalt. My heart pounds as I say a little prayer to myself that I’ll make it across safely (kind of like all those years you played Oregon Trail and hoped when you forded the river it would work out).

Don’t get me wrong, I fear a lot of the standard things too: roaches, heights, sharks in the pool (wait, what?) but crosswalks…crosswalks have an extra element of fear I hope I can one day conquer. They are after all, just pieces of ground with paint next to them. And hey, all The Beatles made it through one just fine.

No Inspirational Quote Required

Internet Stop Trying to Inspire Me

The above article popped up on my Twitter feed today from the Huffington Post. Being that I’m the author of a blog based around the idea of inspiration, the title naturally called out to me. You’d think that maybe I would disagree with something with a subject like this but in actuality, I wholeheartedly agree with everything the writer said.

I wish I could say I felt positive and hopeful every day of the week but as you can tell from many of my posts here, that’s just not the case. None of us would be human if we felt that way all the time. Not to mention, none of us would ever learn much or grow if we were always happy pappy and never affected by anything. This article was a great reminder of that for me. I feel like I have to be positive and upbeat here all the time because that’s the message and feeling I want to give people. But I also want people to be able to relate to me and if I’m a walking inspirational quote, no one is going to be able to relate on any level. I have a hard time giving myself a free pass for being mad sometimes, or feeling down, or not wanting someone to inspire me.

So even I have those days when I just can’t be consoled. When the last thing I want to read is some inspirational quote or article titled “10 Ways to Cheer Up When You’re Having a Bad Day!” And it’s ok to have those kind of days. Sometimes you need to feel whatever emotions you might be feeling that day, whether they’re negative or positive and not have a constant stream of “It’s ok!!!” staring you in the face across your News and Twitter feed cause you know what? It’s not always ok. Sometimes it just flat out sucks.

I know I’ve said it many times but I am nowhere close to being a positive person 24/7. I don’t usually walk around with a big smile on my face and I’m definitely not happy all the time. I get angry. I get moody. I want to isolate from the world. I get sad…just like everyone. I am one giant imperfect human :) We’re all one big imperfect human in this great big world and that’s actually a pretty cool thing. No inspirational quote required.

Poky-ing Around

I noticed this article from Conde Nast Traveler on LinkedIn today. It seemed like an intriguing idea, especially since I had an international trip coming up and I work in travel. Then I got to one particular sentence part of the way through and I was floored:

“Don’t let yourself get stuck walking behind someone poky.”

This is the definition of a “poky” in the dictionary:
Poky

I can’t tell you how many times I’ve been at the airport, walking to/through the security line or trying to make my way up the exit ramp(s) to get into the airport from off of the plane and had people rush around me or just flat out cut in front of me because I’m not walking fast enough (even when I move over to the right getting off the plane). I’ve had people flat out jump under and over the queue ropes just to get in front of me. So by Conde Nast’s definition, I’m a “poky” person.

Perhaps I’m overly sensitive, but I tweeted feverishly back at them that perhaps that “poky” person in front has a disability and can’t walk any faster. Perhaps that person has been used to being picked last for everything in life because she’s slow. Perhaps that person used to fall in the hallways at school and people used to just walk around her. Perhaps she’s spent her whole life always trying to keep up with people. Perhaps when every time someone did that, she felt like she wasn’t good enough. And now you’re telling people in the interest of their time, to just go around them hurriedly because they’re going too slow.

I know they probably didn’t mean to imply what I’m saying but that almost makes it worse. Hanya Yanagihara, who wrote the article, didn’t even think about why someone might be walking slowly or that people who are “poky” might have a reason for that. It’s just not a compassionate thing to say period.

After my car accident, I spent most of the year being super angry because everyone seemed to think their time was more important, as the driver did who hit me. You never know who you might affect when you think that way. Obviously none of us are perfect and even I am guilty of this. But you just never know what might happen if you’re rushing. You might hit someone in your car. Or that “poky” person in front you might feel a giant pit in their stomach when they see you rushing past them because that’s something they’ve had to deal with their whole life. So I just have a really big problem with anything encouraging that type of behavior. So what if you have to spend 30 minutes in customs instead of 12? Maybe stopping and smelling the roses instead of being in a giant rush might actually do you some good.

All I’m asking, Conde Nast (and other publications) is for some sensitivity. Not just about people that are differently-abled but about people in general. Life is short but not so short that we need to completely disregard one another and worry only about doing this quickly or getting through that line so we don’t waste our own valuable time. Think about how your actions might affect others too, and stop to enjoy life. Because it’s so short, you might as well breathe in every last moment, even if you’re spending it in an international customs line. Life is about the journey, not the destination…even when you’re traveling.

National Friendship Day

Good friendsThe main purpose of this blog is not just to tell my story, but to share whatever inspires me; be that a quote, another blog, a person, or something I heard. Today, in honor of National Friendship Day, I wanted to take a moment to thank one of the largest sources of inspiration in my life: my friends. They lead by example and show me how to be a better person. They are the support beams of my very being. They make me laugh when I want to cry. They tell me what I need to hear, even if I’m not ready to hear it yet.

Everyday should be National Friendship Day really because we should be constantly striving to thank those we are lucky to have as friends in our lives; to constantly show them our appreciation. So I say a heartfelt and sincere thank you to all my wonderful friends. Thank you for all you do. Thank you for being there, and thank you for simply being. <3

The Weight of It All

This is a photo from college that shows you just how skinny I used to be.

A very very skinny me in my college days

I had a rather sobering realization a couple of weeks ago. I’ve always been slender, at some point too slender to the point I would get teased and called anorexic (which I think the photo pretty well demonstrates). I never really thought much about how my weight worked in conjunction with my MD, other than I knew it contributed to my being skinny in the first place.

I’m still slender but I’m at the highest weight I’ve ever been at. I’m happy with the way I look. The problem is these extra 15 – 20 lbs mean that’s an extra 15 – 20 lbs I have to try and lift off the couch or get out of the car. That’s an extra 15 – 20 lbs I have to try lift off the ground (or have someone else help with) if I fall and my arms are affected by my disability as much as my legs are so they’re just not as able to do what I need them to be able to do as they were when I was younger.

I pretty much can’t gain anymore weight and I definitely can never let myself get overweight. If I do, I may become completely immobile, never to get off the couch again. It’s a scary thought and something that honestly never occurred to me until the light bulb went off a few weeks ago.

I eat much healthier than I used to. I cut way back on fast food (which used to make up my meal count almost daily). I stopped drinking soda completely for a long time. I’ve since let myself cheat on that one a little bit more though. I eat veggies and fruit and I take vitamins. I’m definitely not as active though. When I was younger I was outside quite a bit. Nowadays I sit at a desk for most of the day and am sometimes too lazy to even get out of my chair, especially in the summer heat. I don’t go on walks like I used to. I’ve been trying to get back into yoga because I used to do that regularly also.

The reality is, myself and my body aren’t as young as they used to be and neither is my metabolism. I can’t eat horribly every day and get little exercise and expect that it’s not going to affect me. I have to work that much harder now to make sure I don’t gain more weight than my body and limited physical strength can handle.

It’s been on my mind quite a bit lately. I want to be healthy and maintain my current weight but I don’t want it to have to be this big stressful thing either. I want to be able to have a soda sometimes. I want to be able to have a giant bean burrito from Miguel’s Jr. or Del Taco on the weekends. But more importantly, I want to be able to just give my body a break and sit on the couch and binge watch TV some days. I don’t want to have to exercise everyday or walk in the heat. I don’t want to push myself so hard that then I fall and end up having to rest for days afterwards anyway.

It’s really hard to find a balance and I don’t want to be inflicting so much pressure on myself that I make myself miserable. But at the end of the day, it’s a balance I have to find and I have faith it’s a balance I will find. My body doesn’t have much choice. If I still want to be able to enjoy the almost 100% independent life I am able to lead, it’s something I’m just going to have to figure out. Come on body…we can do this! <3