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!

You Are Stronger Than You Think

It seems that many of my posts have focused on the gym and fitness as of late.  I would apologize for this, except I really can’t because it would not be remotely close to sincere. The truth is, this is me. I live fitness. I live health. I live trials and triumphs, moments of weakness and feats of strength, and everything in between. This is my new found love and life force, and I would not trade it for anything.

That said, please come with me on another journey.

Late last night, I finished reading an amazing memoir Waking by Matthew Sanford.  Matthew is a man who, at age 13, was in a car accident that left him with a T4 spinal cord injury.  Matthew writes of learning to navigate life in his now “silent” body, and how his discovery of mind-body relationship led him to physical and emotional healing and his eventual practice as an adaptive yoga instructor in Minnesota.  Fitness friends, family, and all other readers: do yourself a favor, whatever your beliefs and practices, and pick up a copy of this book.

I went to bed feeling deeply touched and satisfied, but more than anything else I felt hopeful.

My alarm went off at 7:15 this morning for Saturday morning gym session. I could have rolled over and gotten a few more hours of sleep. I could have said I’d be going Sunday, Wednesday, and Friday next week because I’m off work. I could have said it was the holidays. I had 1, 000 excuses to choose from. I chose hope.

Today’s class was a challenge from go since I have been dragging it after being sick and making a slow comeback. Interval training followed by TRX training.  For those unfamiliar with TRX, it is a Suspension Training, full body workout system that uses gravity and your bodyweight to perform a variety of exercises.  You are in complete control of the difficulty of your workout simply by changing your body position. This is a confusing explanation, so check out this quick video. 

The class was instructed to do one specific move, that started out holding on to the ropes to do a low row (think pulling your chest up to an imaginary bar from a slightly slanted standing position…or don’t imagine it, I’m doing a horrible job explaining things in this post….just take my word for it!), then drop down into a squat, and pull themselves back up.  I did not have the balance to be able to drop myself into a squat without falling and potentially cracking my head open, so it was time to modify! Yay!

I started the exercise by sitting on the floor slightly leaned back and performed my row. From there I was to lift my body off the ground as dead weight with only my heels as the anchor point. Failed attempt after failed attempt began to leave me more than a little bit frustrated.  At this point, Janice came over and foot blocked me so I wouldn’t completely go sliding and I tried again.

Note: Everything from this point on might sound utterly ridiculous to some, but this is what I believe can happen and this was my experience. I closed my eyes and tried to connect my mind and my body in a way that I had read about only hours before. I needed to feel the energy of my heart, of my will, and somehow transfer that energy into my legs, into my core–to come together and achieve this small goal for the day. I inhaled deeply and I could feel the connection. With what seemed like unimaginable strength, I felt my arms start to strengthen and slowly lift by body. I felt my core muscles engage and noticed that the only physical point of connection I had was at my heels.  This was it. I trusted my mind and it got me through step one. Now it was time to trust my body. A 10 second hold of this position was what was being asked of all of me. Closing my eyes again, I hoped. I pleaded with my body to outlast the time. I know I beg a lot of my body on a daily basis, but I needed this one, because I knew I could.  Janice, standing above me, said “trust your body, you are stronger than you think”. And I believed before those 10 seconds disappeared.

Then I collapsed on the ground and started hysterically laughing because all I wanted to do was cry.  The tears came later on in the day, when my soul processed what occurred in the gym. Today, for the first time, even if for maybe only a total of 30 seconds, I fully trusted my mind and my body. The results were awesome.

Until next time…inhale hope, exhale strength…

Make A Difference (through music) Monday

Hi Everyone!

Just a heads up, this will probably be my last post before heading to Camp Care Thursday-Sunday then immediately off to a beach vacation for a week with my family.  I’m trying to “unplug” for this time, as I always do during camp, but you never know what I might get inspired to share with you all during a week on the beach.

I wanted to share a little something about Camp Care before I go though.  I thought, what better way than through music since music becomes a huge inspirational diving board for our morning and evening meetings.  This will be my 6th Camp Care session now, and these two songs have kind of become a perfect definition of what Camp Care is for me and for every one of the therapist staff, volunteers, kids and their families. (Note: get your tissues for the Matthew West song…)

Tenth Avenue North-Love Is Here

Matthew West-The Last Ones

For my readers that don’t know much about Camp Care, please check it out here. It is an amazing, completely free, therapy and recreation camp for children with special needs. Any of my SN parents readers or peers, if you are in the area anywhere driving distance to Connecticut (and even if you’re not) it’s worth checking out for you or your child.  Therapy focuses on both manual therapy techniques and functional therapy. I might have been a few years late on the bandwagon, but it has truly made the biggest difference in my life in terms of other therapies.  At least, that’s how I feel now that I’m an adult and have tried various things for myself. (Second note: you do not have to be of any specific religious affiliation to take part in camp or its activities.)

I know so many of you reading this have been such a huge source of support for me over the years through all my different trials and triumphs and I thank you immensely for that.  Many of you have supported my fundraising efforts in the annual Columbia Classic which benefits Camp Care.  This is so important since the camp, and its therapeutic riding program, are entirely run on donations. Thank you.

Even though I choose to participate in Camp Care as a volunteer first and foremost, when the time comes to participate as a camper, I thank God that I have so many of you praying for me and hoping for me. It makes all the difference in the world for me and my spiritual, emotional, and physical successes during Camp Care. Thank you.

All I ask is that you continue to keep all of us involved in camp in your thoughts and prayers over the coming days. All my love.

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.

Shake it off and step up

It’s ridiculously late right now. At least when I was planning to get “a good night’s sleep” and go to bed three hours ago. There was something I wanted to share here first. Look out for a new, deeply strong and honest post for me in the next day or so, but for now, I have to share this story from Jen’s blog–my cousin though not by blood, friend, and honestly, my God-given gift. The author is unknown, but the story is incredibly powerful and something that hit me in exactly the right spot in my heart this morning…

Once upon a time there was a farmer who had an old mule. The mule fell into a deep dry well and began to cry loudly. Hearing his mule cry, the farmer came over and assessed the situation. The well was deep and the mule was heavy. He knew it would be difficult, if not impossible, to lift the animal out.

Because the mule was old and the well was dry, the farmer decided to bury the animal in the well. In this way he could solve two problems: put the old mule out of his misery and have his well filled.

He called upon his neighbors to help him and they agreed to help. To work they went. Shovel full of dirt after shovel full of dirt began to fall on the mule’s back. He became hysterical. Then all of a sudden an idea came to the mule. Each time they would throw a shovel full of dirt on his back he could shake it off and step up. Shovel full after shovel full, the mule would shake it off and step up. Now exhausted and dirty, but quite alive, the mule stepped over the top of the well and walked through the crowd.

A great attitude. A great way to approach life. Shake it off and step up. Too often we hold on to what has happened to us.

We hold on to it for a week, a month, even years. We cannot shake it loose from our memory. It eats away at us and steals our joy, happiness and peace of mind. The past hurt can create feelings of bitterness, resentment, anger and revenge.

We keep allowing these emotions to be thrown on our backs and if we do nothing, we will be buried deep in the well. Walls will be built in our relationships. We will avoid each other and the cold war begins.

But, we have a choice: keep it inside and embrace the hurt or shake it off and step up. Give it a try. Shake it off and step up. Words that have been said or actions that have been done, shake it off and step up. Let it go. Whatever it is: a rude comment, a past mistake, being ignored, we can stew over it all week. It occupies us all the time.

Too often we nurse hurts, we keep them alive inside and go over them time and time again; not only stewing from them, but now chewing them over and over until it gets us sick. Too often we rehearse hurts, tell everyone what has happened to us.

The cure is to accept what has happened, try to make sense out of it, learn from it, then shake it off and step up. When you let it go you feel free and you are no longer buried in the well. Once you are on your feet again you can take some action. You decide where you want to grow in life, the direction you want your life to take. You decide whether you will allow the hurt to make you a bitter or a better person. Learn from it. Emerge stronger.

Why I don’t mind that “I’m (not) in it” for the 2011 New York City Marathon

I wasn’t sure how today was going to go when I woke up and found out that tonight’s spin class was already full before I got the chance to sign up, but things quickly started looking up when I didn’t have to work and got to go to the beach for the day. I’m not the biggest fan of the beach since it’s not quite the most accessible place in the world, but every now and then with my crutches I don’t mind.

I love the moments when I can just sit and stare out at the water and let the answers to my life’s questions float into me with the tide–and today just that happened.

Ha! Don't you wish CT beaches looked like this?? Photo: Carillon-Beach.com

I’ve obviously been doing a lot of thinking (and writing) about the things that make me happy and the things that I do for me, but I never really shared what led me to question that.  So, here’s a bit of the story…a few months back I became a member of Achilles International a group for people with disabilities who run, bike, do all sorts of sports.  I didn’t really know what I was getting into, but it sounded great. At the start, I got in touch with the head of the CT chapter of Achilles who told me about a handcycle (like a regular bike pretty much, but pedaled with your arms). We also talked about how the New York City Marathon has special spots for handcyclists/Achilles athletes. I was already getting my hopes up!

A few months later, I met Tony, an above knee amputee and all around great guy. He brought one of his handcycles for me to try out and it was pretty awesome. But let me tell you, these things are not for the faint of heart! They take some serious arm power.  I left that day feeling like I had made a pretty cool connection in the adaptive athletics world.

Tony and I right before trying out the handcycle

Fast forward to not getting a lottery pick for the 2011 NYCM and I wasn’t all that upset. Why? By the time I got home from that day, I knew the handcycle was awesome and that I liked it, but I had this tiny voice inside of my head and heart that was telling me it just wasn’t quite right for me. It wasn’t involving my legs enough, challenging them, or allowing me to tap into my true motivations.

In true Molly fashion, I ignored the voice and kept plugging along until I reached a point where that voice got so loud I could barely hear myself think. At that point, I removed myself from the 2 races I was scheduled to do with the handcycle, and went back to the drawing board.

What does all of this have to do with the beach? I’m almost there I promise. About 2 weeks ago, a friend (hey Lor! 🙂 ) approached me about helping to create an adaptive category for a 10k race she helps run in September for the Mari Hall Foundation. I jumped at the opportunity and immediately felt like everything was going to fall back into place.

What I’ve come to realize over the past few weeks is this: I don’t do races to win. I don’t even do them to place. Or for the attention, the one girl in the crowd who is overcoming this challenge known as CP. Because every single one of us has challenges; whether they’re visible or not. I do races because of the challenge; because of the mental and physical push it requires me to commit to as soon as I step on the start line and even before when I’m stretching and spinning and doing whatever else to get ready.

For me, the only way I know to tap into that challenge is on foot because, whether this is fair or not, I equate CP with my legs, not my brain. Actually, that’s not fair at all. Sorry legs, my bad!! And that’s why the handcycle didn’t feel quite right to me.

Okay, okay, back to the beach. Water. I’ve been thinking about this a lot lately too. Many of you might know, how great water therapy is for people with various disabilities. Well in my own head and heart, I’m finally jumping on that bandwagon. (Sidenote: I can’t believe I even just thought, let alone wrote, this sentence given my previous detest/downright refusal to even try this for years!!) As I was watching my 2-year old niece play down by the water today, I swear I heard that same voice that told me the handcycle wasn’t right, tell me water was.

Here’s what I know:

  • I can’t “get out and train” everyday like many other runners/walkers/I don’t even know what category I consider myself do. It’s not ideal right now given that my streets have no sidewalks and tracks are freaking boring.
  • When you’re in the water, you tend to not feel fatigued as quickly, allowing you to possibly get more out of your exercise time.
  • Water holds you up, meaning that I can practice movements without worrying about falling over. Drowning? Eh, a friend once told me I have 4-5 minutes to be rescued if I drown. I’ll risk it.
  • I can walk in water. I mean really walk, without crutches or walker or anything. Do I really need to explain why this is a plus?! Come on! What are 90% of my post about? Okay, you may argue that I can totally do that on land too. I won’t disagree, it’s just way easier in water.

(Disclaimer: These aren’t facts. I’m just a 20 something blogger on a mission to make a change.)

So it looks like water will be another added method of training and therapy this summer. Thanks for sticking by me, and see you all out on the road.
Oh, and for those of you who are really good at reading between the lines: YES I’m doing a 10k in September; YES on foot; YES I already got the okay; and YES I know at least 3 people reading will try to convince me not to! Did I mention I’m really stubborn? 😉