BADD 2013: It Starts With Us

It’s Blogging Against Disabilism Day 2013! A day dedicated to speaking out against disability discrimination of any kind, life obstacles of those with disabilities, etc.

I have been absolutely devouring the amazing posts that are flowing through today; there are some great writers with great thoughts and ideas out there in the Blogosphere. I encourage you to check out Dairy of a Goldfish, where all the posts will be listed, or the BADD Facebook Page.

This is my third year participating in the day. Two years ago, I wrote about intelligence and interacting with people with disabilities. Last year, I missed the actual BADD day, but my post about the dance of Cerebral Palsy brought you into my world of living with a disability, if only for a moment.

This year? Well, buckle up. I don’t really know how the idea for this post came to me or how it’s going to work into the theme of this day, but here we go. Knowing that BADD was coming up, I’d been jogging my brain trying to figure out what I wanted to put out in the world as a person with a disability.  My one small voice.

It’s taken me the better part of 24 years to be “okay” with having a disability.   I think some of this is because I tended to live life with blinders on and not even pay attention to it.  I had great friends and family who helped make it a non-factor in my life and, while this was a blessing, it also was a little bit of a curse.  Full disclosure: I hate that cliche, but I couldn’t think of anything else to write.

But then…life hits you. People are often rude or ignorant, situations aren’t ideal, you’re forced to be independent at times when you’d been used to relying on someone by your side. You can no longer wear those blinders, because this is real life. It’s not going to stop while you adjust.

There comes a point in your life when you have to recognize your situation and your limitations.  Being an adult now (arguably anyway-my sisters will tell you I’m still the baby), that point has come hard and fast over the past few years.  Now, trust me. I’m not, in any way, at all, ever, ever, ever (got it?!) saying that you should be defined by your limitations or let them control your life.  Quite the opposite actually. Recognize and understand them so that you can live your life for you and move beyond them, if that is the path you choose.

How does this fit into BADD?! Hold your breath, because some of you might not like what you’re about to read…

If you don’t want to be discriminated against, start by not discriminating against yourself.   

Simple as that, right? No. I’m not naive. I know it’s not that simple, but it’s the initial step on a long journey. Think logically for a second, and this goes for anyone whether you have a physical disability or other obstacle in your life, if you don’t want someone else to judge you, limit you, or assume something about you, why would you do those things to yourself? You tell your best friend that they can do anything they want, but then you tell yourself that you can’t? That doesn’t sound right to me.

I’ve learned something very valuable on my journey, and even more so now being a fitness instructor of a class for people with various limitations, and that is that we as people with disabilities are the role models of how other people with disabilities should be perceived and treated.  Whether we want to be or not.

Want people to believe in you, to give you a chance?

Believe in yourself.

Want people to treat you with respect and dignity?

Respect yourself.

Want people to understand just how strong you are, that you are not to be pitied?

Show your strength, do not pity yourself. 

Want to be heard, to leave something in this world?

Speak up and don’t be afraid to be a little vulnerable. Let people in.

IT STARTS WITH US!

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I’d love to join your gym…if I could get in your building!

January is traditionally the “Fitness Frenzy” month of the calendar.  People are either rushing to the gym to work off the holiday few pounds, or rushing to the gym to jump start their new year’s resolutions.  Whether you’re a seasoned gym goer or a newbie, you count on being able to just walk in, sign a membership form, and get your fitness on, right? Most people do. But what if it’s not that easy? What if you find that the gym down the street doesn’t have the welcoming, arms wide open feel it boasts about on every single tv, newspaper, and online ad? Let me tell you a bit of my story.

I’ve been an avid gym goer, spinner, and overall group exercise (mainly of the Les Mills variety) for the past six years.  I also have CP.  Yes, I know most of you know this, but just in case someone is stopping by for the first time, which I hope happens. I’m telling you this not because I’m looking for praise or kind words, but because there is a distinct purpose to this post.  During my four years of college I was fortunate enough to be a member of an amazing local fitness facility.  It housed amazing instructors, motivating classes, and exceptionally kind members. It might have helped that the facility’s owner was a pediatric physical therapist, but it was truly one of a kind.  This facility was my refuge–from the stress of a rigorous college load, the drama of living with five other girls, and the general daily grind.  At my highest point I was going to the gym 4 times a week.

Two years later, I am back to living home while saving money and going to graduate school full time.  This gym has now merged with another gym in the area.  It is not far away from where I live, but far enough that I am no longer a member because I wouldn’t be able to go as often.  Two years have gone by and I know I am not as physically active as I was then if you don’t include PT appointments.  Not only can I tell from the fit of my clothes (or lack there of!), but also from how I feel. I am not as happy. I am not eating or sleeping as well. The list could go on and on.

About two weeks ago (wow, there are a lot of twos in this post!) a friend and I decided to join together and change this! We set out to check two gyms in our area, both no more 10 minutes from our houses.  We had some really high hopes for our first visit as we’d heard rave reviews. We pulled into the parking lot of gym #1 around 5pm and that’s when we encountered our first problem. No parking! We didn’t think anything of it and circled the building again. On the second go around I noticed a few things: they only had about 10-15 spots in the whole parking lot and there was NO accessible parking space, marked or unmarked. This probably should have been a giveaway, but no.  We went in, talked to staff, and were pretty pleased with what they had to offer and went for a tour. Only I couldn’t tour the facility because it was completely inaccessible. Machines were bolted down, placed too close together, and throw rugs were covering areas making it very difficult for my walker to navigate. We politely left. I won’t go into detail about the second facility, as it was much of the same.  However, gym #2 had something gym #1 did not, that wonderful staff member that gives your assistive device a once over  while asking “what kind of class are you looking to take?”. Translation: What can of classes can you take?

My whole being was drained by these two experiences. Quite frankly I was angry, but more than anything I was saddened.  Saddened by the fact that the fitness and wellness world as a whole is so closed off to those with special needs.  Yes, I know that there are some exceptions, like the facility I belonged to in college, but by and large society only plans for “typical” people to come and work on their physical fitness.  Which is silly when you really think about it. Everyone needs to be fit. Everyone needs to keep their body functioning at an optimal level. Most importantly, everyone needs to feel good about themselves.  We all have more in common than many people choose to believe, and it’s time the world starts adapting to that.

Note: My story has a bit of a happy ending, as I just took my first spin class at my local YMCA tonight and found it not only accessible, but also accepting!

Summer fun! and the Camp Care Countdown

Yesterday, I read a post by Dana of the Uncommon Sense blog–a wonderful blog about life with her adorable daughter Maya! She talked about having SBAD, or Seasonal Blog Abandonment Disorder, and how she’d been letting her blogging slip by in exchange for ice cream and park trips and all-around fun. I got a kick out of this concept and it is so true!! Summer showcases so many more fun activities than sitting on your couch (ahem, like I am right now) blogging.

For the most part, I feel like I’ve suffered from this a bit as well between weekend getaways, trips to the beach, and just being plain old busy, but right now I feel like writing. About what?

My first swimming lesson went great last week! I was nervous the night before, but when the time came I promised myself I’d try everything at least once and see where it took me. By the end of the half hour a swam all way to the deep end with just two noodles under me for support! Needless to say, I will be having another lesson this week.

We are officially 11 days away from Summer Camp Care 2011 and I couldn’t be more excited! Not only will this summer’s camp be acting as a sort of reunion between myself and some QU friends that I, regrettably, don’t get to see very often, but I also feel more “ready” for this year’s camp.  As I said in this post, you can never be truly ready for the amazingness that camp bestows upon you, but you can try.

First off, I’ll be staying up in the town when Camp Care is located this year, which is going to make things all the more wonderful! Camp is only about 45 minutes from my house and I had been going one because it was easier to shower, etc in my own house but that also meant either leaving early from fun night events with the kids like the BBQ and talent show, or getting home at 11pm only to leave the house by 6:30 the next morning. No good. Staying will allow me to have extra bonding and fun time (and extra sleeping time!!)

I’m also looking forward to taking on the dual role of Camp Care camper and volunteer. At past camps, I have had moments of questioning my place–if I really belong as a camper or a volunteer, what I could even do to help the kids, what I could even do to help myself?  Though I’ve had many times of questioning myself over the past few months, I feel much more sure of my abilities to be available for our amazing kids physically and emotionally. I also feel much more sure of my own goals and things in order to make the most of my experience as a camper.

It’s going to be a great 4 days!! Followed immediately by a week of beach vacation before the semester starts up…but let’s not talk about that yet!!! 🙂

Life with no ceiling

This past week, I was talking to my PT about this whole pool concept that’s been kicking around in my head for weeks.  I have my first lesson tonight, and I had been starting to feel a little overwhelmed, like I had jumped in (no pun intended) a little too quickly. Not to mention I’ve been sticking with my MO of picking some of the most difficult things to accomplish, which is tough when “patience of a saint” doesn’t quite describe who I am.

I am still constantly on that balance beam of trying to figure out how to make CP a part of my life instead of letting it mold me, and that becomes an even more of a struggle when you are constantly choosing physical challenges and physical goals for yourself.  One of the biggest downfalls of creating physical challenges (anyone remember Nickeloden’s Double Dare?! :)) is that we constantly want to make comparisons.  I say we because we are all the same in this way, disability or not, we are human. We compare. We compete. And we try our damnedest to come out on top.  This comparison always gets tricky for me though, since it’s not quite fair to me to start comparing the things I do physically to “normal” able-bodied people.  However, I can’t exactly compare myself to someone with CP, because it comes in so many different forms, you’d be hard pressed to find someone exactly the same. Okay, I know some of you are probably thinking “you shouldn’t compare at all. it’s bad. blah blah”, but I’m pretty sure we can all think of at least one time we have done that, so that option is off the table. It’s not realistic.

A ways into our conversation, my PT said to me “the sky’s the limit for you” and it got me thinking…

It’s a funny thing to think about when you take the time, isn’t it? (Which is probably why you’re not really supposed to take the time, but of course I do.) The sky being the limit to everything we want to do, try to do, or will ever do in our lives? We can never actually touch the sky. The closest I’ve ever come is being in an airplane, and even then there is still such vast, amazing space above me.

In my case, I think starting to understand that the sky is the limit begins by realizing that not being having someone else to compare to is actually one of the best gifts I could receive. It gives me no ceiling, nothing to measure up to.  It allows me to see what a can do and to never stop trying. Ever.

So for now, I’m waking up each morning and asking “What can I accomplish today?” For me. Based on my standards.

More rambles

There are so many random thoughts going through my head today. I blame the absolutely GORGEOUS weather!

Dear Mother Nature, can it please stay like this from now on?? 🙂

Thanks to everyone who showed their support on my last two posts. I definitely felt it. I am happy to report that I’m back on track and really ready to go again. I find myself questioning so many things all the time, but it always comes back to my heart and the dreams and goals that sit, impatiently, inside waiting to be let out. They haven’t changed in years. And that’s OKAY. They are what I want to do, what make me happy, for ME. And I’m going to do them. (I’ll get into what some of those are at a later date).

So, for now, it’s back to basics–stretching everyday (EW!), crawling, standing, walking. And, most importantly, remembering that I need to breathe every now and then. I tend to forget that all too often 🙂

The Dance

That last post I wrote was totally me pulling a Debbie Downer. I was feeling stuck in a rut, and didn’t really know what to do. I can’t really apologize for my feelings as they were expressed, but I can definitely apologize leaving everyone wondering what the heck was going on for a few days.

Crossroads came at the perfect time this week (along with a visit from my college roommate and a spin class) and has really helped me get back on track both mentally and physically. I’m not going to go into details, since a lot of it was really…profound actually…and quite personal as far as the whole brain effecting the body; body effecting the brain thing goes, but what I can say this this:

I’m learning that, sometimes, the only thing to do is to get upset, and get angry, and not know what to do. Because if you deny yourself those emotions, they can so easily turn to hate. Hatred of the situation your in, or worse, hatred of yourself. That is a difficult place to be, and somewhere even more difficult to climb out of once you’re there.

There’s a fine line between the two sides, between the two “worlds” I often say I feel like I find myself living it. It truly is a dance. And the only way to dance it well is to take it each step at a time. I’m still learning the steps…

Frustration

Lost: Motivation.

If found, please return to Molly ASAP.

Just a quick post tonight because, quite honestly, I need way more sleep than I’m about to get. Finished classes tonight! (For a week) then summer class starts, but it’s only 2 nights a week for 5 weeks so that’s pretty much a win.

I just need to vent. Or something. I’ve completely lost motivation lately on anything physical related, and even though I know it’s normal, it’s scaring me a little. And by lost motivation I really mean haven’t done one little thing in a little over two weeks. Granted I’ve had a crazy intense few weeks with school, figuring out classes for summer, and my dog almost dying (he didn’t though, he’s home safe with us!). But those all just feel like excuses to me at this point. I always feel like when I get to the point where I recognize my lack of motivation I should be ready to jump back in, but I’m just not.

And the only thing I can think is, if all these things are so important to me (walking, PT, everything) how do I so easily blow them off for week. It’s frustrating. It’s upsetting. Yet, I don’t know quite how to get back. I’m not trying to throw myself a pity party here. I just don’t really get it.

Do any of my other followers have this issue with PT or other such things? What do you do?

The blessing (and curse) of Google…

I’ve come to realize lately just how much of my time is spent on Google. Sure, sometimes it’s purely out of procrastination (kindof like me writing this post right now instead of working on a take-home exam), but a lot of times I spend hours on the search engine trying to find any information on anything. I’m weird that way, I suppose.

First of all, I need to say, I’m not writing this post to look for your positive accolades about the things I may chose to do in my life. I’m writing this post to be honest. And to bring awareness to something that doesn’t get enough.

The fact that we, as a society, have the opportunity to have all this vast amount of information readily available is a pretty awesome blessing. Without google, I wouldn’t have find some of the many blogs I follow, for one. Search engines have changed our world on many levels.

Yet, they’re also a curse sometimes. What do I mean? I’ve always googled CP. You never know what new info or people have surfaced as resources. When I was younger, I would search things because I didn’t want to ask anyone else about things. Now, it’s a little different. Now, I’m a little sick of asking people and getting their “professional opinions” instead of facts. Yes, there is a difference.

I know that the internet isn’t always the best source but, in my opinion, it’s better to hear from someone with similar experience than someone who has spent their time only reading about things in textbooks. Lately–maybe in the past 6 months or so–the search has expanded from just CP to CP and…

  • CP and…running
  • CP and…marathons
  • CP and…exercise/Crossfit
  • CP and…walking

Okay, so maybe there is a pattern here. And maybe I am a little insane. But this is what I’ve constantly been spending my time Googling lately. And this is where the curse comes in. Sure, I’ve found some valuable contacts, like Greg and Amy, and read some amazing stories, like those of Dominique and Marissa, but there isn’t much more info out there.

For some things, it’s no big deal, but for many others it’s frustrating. Like the fact that there are no “training plans” for people with disabilities who want to run an endurance event. I get that those are often very individualized and have to be altered, but nothing?? You can’t tell me no one has ever done it. Clearly people have. Same thing with walking. Same thing with Crossfit. Okay, maybe not Crossfit, because that’s a bit of a “new” thing, but exercise certainly. People (of all abilities) exercise everyday!!

That’s when Google becomes a curse. When you’re looking through this amazing super-database, and the information is just not there.

The more time I spend on searching, and the more I try to come up with my own database for myself, the more I am introduced to a new chapter in my story and a new meaning to my struggle. Maybe I will do some of these things and maybe, when I do, I will be able to get the world out to others who are just as frustrated by this wall. Did I just say I’m going to do a marathon? I don’t know. I guess you’ll have to stay tuned! 😉

Note: this wasn’t meant to attack Google. I’m hating on all search engines equally! 🙂

We Are Alive, We Are Strong: Pedal for a Purpose 2011 Recap

Here we are, three days post P4P2011. I want to start off by saying that this is my third time trying to sit down and write this recap. I haven’t been able to quite find the right words to fully capture everything I’d like to share with all of you, so let’s hope this time I can get it all down…

We all knew this year was going to be big. Not only because the even gets bigger every year (physically and emotionally), but also because the cause was going to touch many of us on a much deeper level. The event was to benefit the CT chapter of the MS Society/Team Jenifer. I talked a little bit about Pedal and about Jen, who the event honored, in a previous post, but I have to say something again, because Jen’s strength, determination, and all around awesomeness simply blew me away again on Sunday.

Leading up to the event, I was nothing short of extremely excited. I have, for the past 4 years, felt like P4P was my Christmas not on Christmas. It is the day I most look forward to on the calendar.  There is just something amazing about being able to take the one thing you are most passionate about and use it to do something good. That is exactly what P4P is for me. However, I’d be lying if I said I wasn’t nervous as well. Other than the Monday before, the last time I’d been spinning (due to class schedules and lack of rides) was probably in January.  I was riding three hours and wasn’t sure how my body, or my mind for that matter were going to fare.  All that fear and anxiety immediately vanished upon entering the gym though. Jen was the first instructor of the day, and the first instructor for my 3 rides. There was something so powerful in those first 50 minutes. Dare I say more powerful than any of the other 5 hours, with the exception of maybe the group ride at the end with all 5 instructors. I honestly felt like the hour went by so fast, because the only thought in my head (after the initial “OMG. Can’t breathe. So. Out. Of. Shape.”), was how I was here, spinning with someone I look up to so much. A woman who I have found so many similarities with. A women who refuses to let a diagnostic label define her.  There were a few moments when I really doubted my ability to finish out the hour, but all I had to do was catch Jen’s eye **first tears of the day** or look at the banner behind the stage and that was enough.

The banner read:

Behind every success is effort,
Behind every effort is passion,
Behind every passion is someone,
With the courage to try.

The energy in the room was on fire all day. There was nothing stopping anyone from doing their part to kick some MS butt. I had a two hour break to enjoy the environment and take LOTS of pictures! The instructors, the riders, and the music all really spoke to this amazing cause during every hour.  The second hour I rode was taught by my cousin. Which always proves to be challenging both physically and mentally (she likes to pick songs that make me cry).  I knew that I had to save some energy during this ride because I only had an hour in between to rest before my last ride, but all bets were off when it was time to sprint and the song was Pink’s F*ckin’ Perfect. Gets me every time. The sprints were on the chorus (please look the song up if you’ve never heard it) and I had no choice, but to go all out. The song means a lot to me, for a lot of different reasons that aren’t the point of this post, but it also meant a lot to combine this song with spinning–the one thing in my life that makes me feel absolutely perfect. At the end of one of the sprints, I looked over and two of the instructors were mouthing the words to me. It all comes together. **Second tears of the day**

The third hour I rode, also the final hour, is always the most moving for me. All of the instructors get up on stage together and “team teach” the final ride.  It is also, without a doubt, the hardest ride because each instructor brings their own strength and determination, as well as their desire to push each other to the absolute limit! 🙂  This year was no different, but the last ride had a little something special about it for me this year. As I looked up to each one of those women, figuratively and literally, I was reminded of what true friendship is and reminded of what it means when you care so deeply for a person, that you will be there to hold their hand through everything. **third tears of the day**

What more can I say really? Other than the day was absolutely amazing, start to finish. This was the 4th year for the event and, by all standards, our best one yet! In the end, we raised over $11,000 to FIGHT MS!!…and had countless more memories!!

It’s funny the way life works. The people you meet, the things you do, the moments that forever stay etched in your heart. I was reminded of something at P4P this year that I often forget; or at least I forget lately. I can’t let my life be defined for me. By a person, by an event, and most definitely not by a diagnosis. No one knows what tomorrow will bring. No one. So why waste precious moments letting your life be defined, instead of defining it yourself?

Live each moment. Give everything you’ve got. Feel the fire inside of your soul. Own it. Hope. Never say never. And, most importantly, let everyone know how much they mean to you…I make sure to tell these 5 women every chance I get!

And for your viewing pleasure, I’m going to step out of my comfort zone for 23 seconds and post this video (in purple):

Thanks for sticking with me! 🙂

Photo Credits: Molly Carta, Karen Butler, Ron Kochman

If it makes you happy

…it can’t be that bad. Right?

This post has been on my mind for a while, though I don’t have the slightest idea where it’s going to end up. I’ve wanted to blog for weeks, but had papers due and sleep to take advantage of whenever I could.

Last weekend, my Dad and I went to see Elton John (for the 5th time together) at the DCU center is Worcester. It was a Christmas present for him, with the added bonus that he had to take me to get the present. 😉 He put on an amazing show, playing a mix of everything from the hits, to new music with special guest Leon Russell, and two of my favorites which he never plays live–Funeral for a Friend and Candle in the Wind! Did I mention how amazing it was??

While I was at the concert, I had one of those incredible, indescribable moments where you just find yourself thinking “wow, this is my life”. It was amazing to spend the time with my dad, something we don’t get to do very often due to our busy lives, and to be able to share this experience, for the 5th time in my 22 years, of seeing a true legend take the stage and play to a sold out crowd for 3 straight hours. He even jumped on the piano at one point and did a little handstand type thing on the keys! Such classic Elton! 🙂

Then he played “Don’t Let The Sun Go Down On Me”.

This is one of my favorite song/lyric combinations of all time.  As I was listening and singing along, the same line that always touches me hit my heart full force. “But these cuts I have, oh they need love, to help them heal.”

These words have always rang true for me. Yet, in that arena, in that moment, it reached a whole new level.  I have cuts. I have many physical cuts. Many relating, in some way or another, to Cerebral Palsy.  These cuts have had various meanings: surgeries, injections, falls…life.  Each of these cuts was made under the guise of  betterment. To make me stand better, walk better, function better. Be better. Because, according to some logic, being better=being happier. Right? Wrong. These cuts, well, they led to a lot of scars. Not the kind of scars you can see. The hidden scars. The invisible scars. The scars on the inside, on your heart. I never understood this logic, but there was one thing I did understand. The physical cuts will heal on their own.  All that will be left will be thin scars.  These physical scars, however, will always serve as a reminder of the emotional ones. In order to heal those, you need to love and feel love. And sometimes that love comes by doing something you love.

For me, that’s working on walking by myself. (I don’t know where this openness is coming from, but I’m just going to go with it before my brain tells my heart to stop).

The past few weeks have felt like a giant answered prayer for me.  I’ve been working on walking a lot in PT and looking up all sorts of information that I think could help. In it’s own way, this has been, and continues to be, a healing process for me. It might one half hour every week (sometimes less), but for that short amount of time, I am as happy as I can imagine myself being.  With each step, I feel love and I feel healing.

Walking used to be about normal.

It used to be about a cure.

It used to be about forgetting CP.

It used to be about proving so many people wrong. (Okay, I can’t lie. Ir’s still a little about that.)

Today? Today it’s about that feeling on the inside.

It’s about believing in where I am and who I am and my strength and determination to be going after something that is so not easy.

It’s about making every one of those scars on the outside mean something, and making the one’s on the inside slowly start to close.

It’s about knowing I can, and knowing that when I do, someone else out there will believe they can too.

It’s about love, and happiness, and healing.