...is one simple little statement to inspire you. And to cause you to be completely honest with yourself and your feelings. I've been completely unmotivated to blog lately and, honestly, completely unmotivated to do much of anything. There's no real reason. I think I'm just in a "trying to find my way" stage again, and sometimes when that happens all I want to do is sit in my bed and eat ice cream while looking up various things on the internet; some of which are completely and utterly useless. I have most definitely not been entirely honest with myself or others regarding my emotions either.
I've been trying really hard to stick to my exercises and stretching and I was doing well for about a week and a half, I think because I was noticing even the smallest amount of improvement (aka being HAPPY that I was sticking to it), but then things started to change.
On Sunday afternoon, I finally secured my registration in the Columbia Autumn Classic Road Race to benefit Camp Care. This was the first 5k I did last year, and my first one ever, so there was no way I was not going to race it again. It's been stressing me out a lot though since I registered, and I think that's playing a role in all of this. My loyal readers will notice I never did a true recap of the Hope is Coming 5k in August. That's because it was miserable. To say the least. My leg's cramped within the first mile, it was way hotter than expected, and my time was so far off of my goal. Did I finish? Yes. Was I happy about it or proud of myself? No way in Hell. Here's the thing. The course was an out and back, so as I was approaching Mile 1, I saw people already on their way back--finishing in 22 minutes, 30 minutes, 45 minutes. As each person passed me going the opposite direction and as each foot pounded down on the pavement, it felt like a painful reminder of the differences I face, something I so often, and so effectively, shove out of my mind.
So, you know what, I'll admit it. I'm terrified of this race on the 24th. I'm terrified that I will cramp up again and my body will reject EVERYTHING that my brain is asking it to accomplish. I am terrified that I will go in with a goal to do better that last year, and that belief in myself and mental determination won't be enough. I'm terrified that I am looked at as "the girl with CP" who does these 5k just so I can feel good about myself or so that I can gain some attention in the "able-bodied" world.
But most importantly, I'm terrified that I set myself up for failure by putting myself in these situations. Failure is my comfort zone. Quitting and having people quit on me is my comfort zone. Having to defend myself against labels and the "you can't do thats" is my comfort zone. And I don't want this to be that. I'm terrified that it will.
All this being said, I'm trying so hard to not let it be that compfort zone and when I heard this quote on Grey's Anatomy tonight, it reminded me that I have to keep fighting:
"You don't find something you love that much and let it go. You hold onto it, throw yourself in deeper."
It's not so much the 5ks that I love (even though I do get runner's high and do love them), or the spinning, or the balance exercises or the stretching. It's the happiness I find in them and through them. Happiness when I show signs of improvement. Happiness when I take control of my own life. That happiness is not something I can afford to lose. So, I will continue to run (well, walk), I will continue to spin, I will continue to work on my PT, and I will continue to find my way.
I want that happiness to be my new comfort zone.
Showing posts with label CP. Show all posts
Showing posts with label CP. Show all posts
Thursday, October 14, 2010
Saturday, August 28, 2010
Exercise, More Than Just Weights and Gyms
Okay, okay, I've been a bad blogger! I'm sorry! I know I have so many posts to write, including a recap of the Hope is Coming 5k and everything about Camp Care 2010. They'll come, I promise! Right now though, when I can't sleep, something else is coming to my mind...exercise.
This has been on my mind a lot lately. I've always loved exercise! Okay, maybe not loved, but it's always interested me at least. Even when it wasn't really something I was good at. And even when it was just annoying stretches, that seemed really pointless, the school PTs I had would give me. I knew there had to be some benefit. As I got older, exercise went from being more of a chore, to really becoming a hobby for me. Whether it was karate, horseback riding, spinning, lifting, and now running, I always have loved the concept of pushing my body to a point where it isn't a body with a neurological condition anymore-it's a body. Period. A body that needs to tap into it's mental strength to get through the workout.
Running, well walking, has been at the forefront of my hobbies lately as most of you know, and I've been toying with the idea of becoming more serious with it. And by serious I mean actually training for prolonged periods of time instead of the week before a race. :) I decided to google CP, exercise, runner, and blog to see what came up and came across two wonderful bloggers and their blogs: Katy over at Teen Cerebral Palsy and Greg over at The Casual Vegan. Both have CP, and both are very much into exercise. On one of Katy's posts, Greg commented with the question of how many of us are into serious exercise, so I thought I'd add my two cents.
Even though my history with exercise has been pretty much on going in some way or another for my whole 21 years, it really has begun to pick up recently and I consider it to be at an even bigger starting point right now than it ever has been.
For the past few months, after my treatments at Crossroads I've been going downstairs to work with Dan in the gym. If you're reading this, hey dude, you're famous. :) The whole concept intimidated me at first. It took me years-literally-to join a gym, and I'm still not fully comfortable doing any form of organized exercise with another person. This was going to be a whole new test for me. Sometimes even the little tasks that you wouldn't even think would be an issue for me if you knew me, like shooting a basketball, are tough. It's not something I really like to make an issue of, so letting someone who I consider my best friend see something like that was not something I was looking forward to.
Painfully long story short, thank God that Dan has this job, because it definitely helps to have someone you trust and who believes in you working with you (Side note to my new special needs parent readers: listen to your child if they tell you they don't like their PT. Chances are it's more than they just don't like the exercise itself. The relationship is THE most important factor in success!!).
Some days are harder than others, just like they would be for the average person in a workout. Some tasks are harder than others. As me to do a push-up? Done. My arms are beasts. Ask me to practice walking using only a giant physio ball as my balancing aid? I'm sweating and exhausted after 3 steps.
No matter what it is I'm working on though, that same feeling of pushing my body comes through. I have goals just like anyone else. And I need to work to make them happen. I think this has really started to hit me between Camp this year and last week's workout.
Phase One: I'll get more into this when I get the time to write a true Camp post, but one night afterward, a bunch of us decided to do a Crossfit workout (read between the lines: INSANE!). I don't really know what pushed me to want to join everyone that night, I still say it was divine intervention, but here I was in a room of people that I look up to immensely for their physical and mental strength and I was about to workout along side them. I was all set to have my own little Molly workout somewhere off to the side while they did their thing, when I was pretty much told that wasn't happening and I was doing the same workout. Okay, so I didn't do the 50 pull-ups, but that was purely for logistical reasons. I did 50 pull-downs instead. :) For the first time, I was completely comfortable and completely in this element. The mental overtook the physical and I was just pushing to get to the goal. Which happened to be girls vs. guys, so clearly I needed to do my part.
Phase Two: This week I was working with Dan and I was walking with the ball. I was getting completely exhausted super quick as usual, but I needed this week to be different. I've been selling myself so short lately with so many things and I needed to push through being tired and scared that I was going to fall any second and just keep working toward my goal literally one step at a time. For me, it's always going to be harder to push through the barrier-physical or mental-in this type of a setting because it's one-on-one. Not to mention that because I'm working on tasks that are meant to push my body and meant to help me get stronger in ways that I greatly lack due to having CP, the chance for struggle and frustration is going to be much higher. But something that I had to do this week made me realize that, that struggle and frustration is okay because it's getting me somewhere. I was standing and holding on to a set of suspended rings for balance. I was pretty nervous and probably having a little harder time than I was letting on. I for sure thought I couldn't hold myself up on my legs any longer, but probably made it at least 30 seconds longer than I was telling myself I could. Afterward I started thinking that it doesn't matter if I'm working my butt off running miles as some would, or if I'm spending that extra 30 seconds working on a balance activity. I'm still pushing my body and I'm still going to get my goals.
Finding the right balance of pushing myself and holding back was hard for me at first, and it still is. I want to treat my body just as anyone else would treat theirs, but I also have to be prepared for it sometimes to physically react differently with more fatigue and recovery time. I'm not too good at this, because it requires patience, a virtue I have yet to fully master, but I'm getting there. I'm constantly learning anytime I do any form of workout, that my body is just like everyone else's in that it's going to change from day to day and I really need to listen to it. That doesn't mean though that I give myself a free pass to just sit on the couch all day because I have CP and need to modify some things or because someone says it might not be the best idea for my body. I know my body. I will make that decision.
No, I don't know how many of us out there are into serious exercise (sorry if you were looking for that statistical answer), but I know I officially can't live without it.
Oh, and one more note to my parent readers: if your child shows any interest at all in any form of physical activity or recreation-or even if they don't-don't hesitate to get them involved!! Even if a doctor, or PT, or protective family member tells you not to. And even if it's not necessarily geared toward kids with special needs. I think sometimes it's better for it to be a more mainstream activity. They will tell you what is right for them. And it just might change their life. It changed mine!!
This has been on my mind a lot lately. I've always loved exercise! Okay, maybe not loved, but it's always interested me at least. Even when it wasn't really something I was good at. And even when it was just annoying stretches, that seemed really pointless, the school PTs I had would give me. I knew there had to be some benefit. As I got older, exercise went from being more of a chore, to really becoming a hobby for me. Whether it was karate, horseback riding, spinning, lifting, and now running, I always have loved the concept of pushing my body to a point where it isn't a body with a neurological condition anymore-it's a body. Period. A body that needs to tap into it's mental strength to get through the workout.
Running, well walking, has been at the forefront of my hobbies lately as most of you know, and I've been toying with the idea of becoming more serious with it. And by serious I mean actually training for prolonged periods of time instead of the week before a race. :) I decided to google CP, exercise, runner, and blog to see what came up and came across two wonderful bloggers and their blogs: Katy over at Teen Cerebral Palsy and Greg over at The Casual Vegan. Both have CP, and both are very much into exercise. On one of Katy's posts, Greg commented with the question of how many of us are into serious exercise, so I thought I'd add my two cents.
Even though my history with exercise has been pretty much on going in some way or another for my whole 21 years, it really has begun to pick up recently and I consider it to be at an even bigger starting point right now than it ever has been.
For the past few months, after my treatments at Crossroads I've been going downstairs to work with Dan in the gym. If you're reading this, hey dude, you're famous. :) The whole concept intimidated me at first. It took me years-literally-to join a gym, and I'm still not fully comfortable doing any form of organized exercise with another person. This was going to be a whole new test for me. Sometimes even the little tasks that you wouldn't even think would be an issue for me if you knew me, like shooting a basketball, are tough. It's not something I really like to make an issue of, so letting someone who I consider my best friend see something like that was not something I was looking forward to.
Painfully long story short, thank God that Dan has this job, because it definitely helps to have someone you trust and who believes in you working with you (Side note to my new special needs parent readers: listen to your child if they tell you they don't like their PT. Chances are it's more than they just don't like the exercise itself. The relationship is THE most important factor in success!!).
Some days are harder than others, just like they would be for the average person in a workout. Some tasks are harder than others. As me to do a push-up? Done. My arms are beasts. Ask me to practice walking using only a giant physio ball as my balancing aid? I'm sweating and exhausted after 3 steps.
No matter what it is I'm working on though, that same feeling of pushing my body comes through. I have goals just like anyone else. And I need to work to make them happen. I think this has really started to hit me between Camp this year and last week's workout.
Phase One: I'll get more into this when I get the time to write a true Camp post, but one night afterward, a bunch of us decided to do a Crossfit workout (read between the lines: INSANE!). I don't really know what pushed me to want to join everyone that night, I still say it was divine intervention, but here I was in a room of people that I look up to immensely for their physical and mental strength and I was about to workout along side them. I was all set to have my own little Molly workout somewhere off to the side while they did their thing, when I was pretty much told that wasn't happening and I was doing the same workout. Okay, so I didn't do the 50 pull-ups, but that was purely for logistical reasons. I did 50 pull-downs instead. :) For the first time, I was completely comfortable and completely in this element. The mental overtook the physical and I was just pushing to get to the goal. Which happened to be girls vs. guys, so clearly I needed to do my part.
Phase Two: This week I was working with Dan and I was walking with the ball. I was getting completely exhausted super quick as usual, but I needed this week to be different. I've been selling myself so short lately with so many things and I needed to push through being tired and scared that I was going to fall any second and just keep working toward my goal literally one step at a time. For me, it's always going to be harder to push through the barrier-physical or mental-in this type of a setting because it's one-on-one. Not to mention that because I'm working on tasks that are meant to push my body and meant to help me get stronger in ways that I greatly lack due to having CP, the chance for struggle and frustration is going to be much higher. But something that I had to do this week made me realize that, that struggle and frustration is okay because it's getting me somewhere. I was standing and holding on to a set of suspended rings for balance. I was pretty nervous and probably having a little harder time than I was letting on. I for sure thought I couldn't hold myself up on my legs any longer, but probably made it at least 30 seconds longer than I was telling myself I could. Afterward I started thinking that it doesn't matter if I'm working my butt off running miles as some would, or if I'm spending that extra 30 seconds working on a balance activity. I'm still pushing my body and I'm still going to get my goals.
Finding the right balance of pushing myself and holding back was hard for me at first, and it still is. I want to treat my body just as anyone else would treat theirs, but I also have to be prepared for it sometimes to physically react differently with more fatigue and recovery time. I'm not too good at this, because it requires patience, a virtue I have yet to fully master, but I'm getting there. I'm constantly learning anytime I do any form of workout, that my body is just like everyone else's in that it's going to change from day to day and I really need to listen to it. That doesn't mean though that I give myself a free pass to just sit on the couch all day because I have CP and need to modify some things or because someone says it might not be the best idea for my body. I know my body. I will make that decision.
No, I don't know how many of us out there are into serious exercise (sorry if you were looking for that statistical answer), but I know I officially can't live without it.
Oh, and one more note to my parent readers: if your child shows any interest at all in any form of physical activity or recreation-or even if they don't-don't hesitate to get them involved!! Even if a doctor, or PT, or protective family member tells you not to. And even if it's not necessarily geared toward kids with special needs. I think sometimes it's better for it to be a more mainstream activity. They will tell you what is right for them. And it just might change their life. It changed mine!!
Saturday, July 24, 2010
Why Do I?
I may not entirely love being an unemployed college graduate right now, but if there's anything I do love about it, it'd be all this free time I have to think up, and write, more blog posts!! What wisdom do I have to share today you ask? Well, it's not really wisdom at all I don't think. Instead, I thought I'd give my readers a little glimpse into my brain and what makes me tick. Lately, I feel like my life has solidified, more so than ever, around three interests--passions if you want to call them that (I do!).
For the past 20 days, I've been getting up at ungodly hours (okay, maybe not, but they are for a college grad!) to watch the 2010 Tour de France. Now, my first motivation for doing this was to watch Lance Armstrong in his second year of a retirement comeback and his-really now-last official Tour. More on that later though. I've been a follower of the sport for many years now, since Lance Armstrong's original comeback in 1999 after his battle with cancer, and I often get asked if I stopped watching the tour when he retired, or if I'll keep watching now that he'll really be done. My answer is always yes. Cycling is not just a sport that you can check yourself out of when your favorite rider is gone as you might with some other sport. I don't just familiarize myself with the top riders in the peloton (big group on the road), I know them all. I make it a point. I've learned a lot about the tactics of this intense endurance sport, and see the benefits of cycling being both a team and individual sport. Cycling has truly become one of my passions.
It is because of that passion that I took up spinning-indoor cycling-in the summer of 2007. I knew that I probably could not ride a true road bike, for reasons I talked about in this post, but eventually Spinning became my road biking. It became my release of negativity that life can sometimes bring, and my hour of "me time". I cherished, and still do cherish, my ability to spin at least once a week. I know this is not something that not everyone can make the time for and I know that many people with CP or other disabilities might have difficulty doing. I thank God that I was blessed to believe that I could take part in such a class and go out and do it. Thanks to my beginning interests in cycling, spinning is now a passion that I can't live without.
Lately, I've developed an interest in another interesting endurance sport: running. Okay, so maybe I don't exactly run, but still. It all started last October. A friend of mine called me asked me if I wanted to do a 5k with her that Sunday that was going to benefit Camp Care, the free camp for children with special needs, run by Crossroads Physical Therapy which I've talked about here. I could not turn down the opportunity, but 3.2 miles? Continuously? Was I nuts? Yes! Not only was this a continuous 3.2 miles, but it was ALL uphill!! Except for the last .2 miles. Either way though, I walked the entire race and finished it in 2 hours, 11 minutes and 33 seconds! It was the most amazing feeling to cross that finish line on my own and take pride in such an accomplishment. After taking part in that 5k, I realized that you don't need to be running to have the "runner's high". It's simply chasing a dream, feeling on top of the world, and in control. Run or walk. I've done another 5k since-the George Washington Bridge Challenge 5k across the GWB. It was an American Cancer Society event I did with my friend from college who has a cousin diagnosed with Leukemia shortly after birth. He is now 6 and in remission!! Again, it was an amazing experience. I completed that race in 1 hour, 18 minutes, and 12 seconds! I think the major time difference had a lot to do with the GWB being completely flat, but it was also the attitude. I'm doing my next 5k 2 weeks from today. The Hope is Coming 5k to benefit the Smillow Cancer Hospital. My goal is to get my time down to an hour or less (slightly irrational I know). 
It started as an idol, moved into a hobby, and has now transformed into a mantra and a way of life. LIVESTRONG. The one word motto from Lance Armstrong after he launched his foundation to raise money and awareness for cancer research. I've always looked up to Lance for his courage, strength, and overall ability to fight, and beat, the odds. When he launched LIVESTRONG, I just looked up to him that much more. Whether he ever enters the pro-peloton again. Or any sporting event for that matter, he has taught me what it really means to fight, to triumph, to believe in a cause, and to make a change. THAT is why I do this. Because it's not a matter of just living, but living strong. With every pedal stroke and every step I take on a course, I am putting the LIVESTRONG way of life into action.
These three passions are: Cycling and Spinning, Lance Armstrong and his LIVESTRONG campaign, and 5k races.
For the past 20 days, I've been getting up at ungodly hours (okay, maybe not, but they are for a college grad!) to watch the 2010 Tour de France. Now, my first motivation for doing this was to watch Lance Armstrong in his second year of a retirement comeback and his-really now-last official Tour. More on that later though. I've been a follower of the sport for many years now, since Lance Armstrong's original comeback in 1999 after his battle with cancer, and I often get asked if I stopped watching the tour when he retired, or if I'll keep watching now that he'll really be done. My answer is always yes. Cycling is not just a sport that you can check yourself out of when your favorite rider is gone as you might with some other sport. I don't just familiarize myself with the top riders in the peloton (big group on the road), I know them all. I make it a point. I've learned a lot about the tactics of this intense endurance sport, and see the benefits of cycling being both a team and individual sport. Cycling has truly become one of my passions.It is because of that passion that I took up spinning-indoor cycling-in the summer of 2007. I knew that I probably could not ride a true road bike, for reasons I talked about in this post, but eventually Spinning became my road biking. It became my release of negativity that life can sometimes bring, and my hour of "me time". I cherished, and still do cherish, my ability to spin at least once a week. I know this is not something that not everyone can make the time for and I know that many people with CP or other disabilities might have difficulty doing. I thank God that I was blessed to believe that I could take part in such a class and go out and do it. Thanks to my beginning interests in cycling, spinning is now a passion that I can't live without. Lately, I've developed an interest in another interesting endurance sport: running. Okay, so maybe I don't exactly run, but still. It all started last October. A friend of mine called me asked me if I wanted to do a 5k with her that Sunday that was going to benefit Camp Care, the free camp for children with special needs, run by Crossroads Physical Therapy which I've talked about here. I could not turn down the opportunity, but 3.2 miles? Continuously? Was I nuts? Yes! Not only was this a continuous 3.2 miles, but it was ALL uphill!! Except for the last .2 miles. Either way though, I walked the entire race and finished it in 2 hours, 11 minutes and 33 seconds! It was the most amazing feeling to cross that finish line on my own and take pride in such an accomplishment. After taking part in that 5k, I realized that you don't need to be running to have the "runner's high". It's simply chasing a dream, feeling on top of the world, and in control. Run or walk. I've done another 5k since-the George Washington Bridge Challenge 5k across the GWB. It was an American Cancer Society event I did with my friend from college who has a cousin diagnosed with Leukemia shortly after birth. He is now 6 and in remission!! Again, it was an amazing experience. I completed that race in 1 hour, 18 minutes, and 12 seconds! I think the major time difference had a lot to do with the GWB being completely flat, but it was also the attitude. I'm doing my next 5k 2 weeks from today. The Hope is Coming 5k to benefit the Smillow Cancer Hospital. My goal is to get my time down to an hour or less (slightly irrational I know). 
Okay, I've shared two of my passions. By now I probably just sound like a crazed "wannabe athlete". Some of you might even be saying, "But this can't be safe/healthy/whatever you'd like to call it, because you have CP" So, WHY DO I do this?! Well, that's where passion #3, and the strongest passion of all comes in.
It started as an idol, moved into a hobby, and has now transformed into a mantra and a way of life. LIVESTRONG. The one word motto from Lance Armstrong after he launched his foundation to raise money and awareness for cancer research. I've always looked up to Lance for his courage, strength, and overall ability to fight, and beat, the odds. When he launched LIVESTRONG, I just looked up to him that much more. Whether he ever enters the pro-peloton again. Or any sporting event for that matter, he has taught me what it really means to fight, to triumph, to believe in a cause, and to make a change. THAT is why I do this. Because it's not a matter of just living, but living strong. With every pedal stroke and every step I take on a course, I am putting the LIVESTRONG way of life into action.If I ever doubt my abilities, or whether it's safe for "someone with CP" to be doing these things, I look down to my left wrist where my yellow LIVESTRONG wristband sits, and am reminded that this is my life, and I will hold the same attitude I have since I began following Lance Armstrong in 1999.
I know I have a wide variety of readers to this blog, but I encourage you (and your children!) to find your own ways to live the LIVESTRONG way of life. :)
Photo Credits:
Peloton Photo: http://www.photosfan.com/images/2009-tour-de-france1.jpg
Livestrong Photos: Twitter.com/lancearmstrong
Friday, July 16, 2010
Inspiration Friday
For my readers, here at home and in my special needs community, check out this article my friend Katie sent me.
The article is about 8 Year Old Abby who created lemonade stand kits and the slogan "When Life Gives You Lemons, COLOR" in order to raise money for donations to a hospital where her 6 year old brother Cameron, who was diagnosed with CP, attends many for many PT treatments and different procedures.
This little girl is truly inspirational and exemplifies what life is all about...
The article is about 8 Year Old Abby who created lemonade stand kits and the slogan "When Life Gives You Lemons, COLOR" in order to raise money for donations to a hospital where her 6 year old brother Cameron, who was diagnosed with CP, attends many for many PT treatments and different procedures.
This little girl is truly inspirational and exemplifies what life is all about...
Thursday, July 15, 2010
NICU
First of all, this post was inspired by Ellen over at Love That Max. I'm not sure if I've talked about Ellen before, but she's mom to Max, a wonderful 7 year old with CP. She is an amazing mom and all she does for her children definitely shows through her writing! Ellen's blog was the first I followed and I'm simply addicted to it! Check it out and I'm sure you will be too! Her blog really inspired me to put everything out there in each of my posts, because you just never know who might stumble upon it one day. THANK YOU ELLEN! :)
This week is Babies Week on Discovery Health Channel, and they are premiering a new show called NICU following 3 top Neonatal Intensive Care units in the country. This show is pretty exciting for those of us in the special needs community, because it showcases the beginnings of life which so many of us have experience with (preemies, trauma at birth, etc.) I invite you all to read Ellen's post about the NICU experience and the connection we all share before continuing on with my post here, because I can't do it justice...
Did you finish reading yet??
Really, I meant it, go read the post.
Okay, you should be done now! This post really touched me, for the obvious reasons, and because everything that Ellen talked about knowing as a mother of a child with special needs, I can say I have also felt or known growing up with CP. This is what I said in response to Ellen's post. I don't think I could say it this way if I tried it again, so I'm just going to paste it in.
I know that a lot of parents read this blog, so on a post that touches so many of you, I thought maybe I'd share a "child's" perspective...I'm not a parent of a child with special needs. I am a child with special needs. Well, more an adult now, but every one of those things you mentioned that you know as a parent of a child with CP, I can honestly say I know each of those too, having CP. It's obviously very different for a parent than it is for a child. I don't remember a lot of what would have probably been the "tougher" times for my parents, but I do remember my own thoughts of doctors visits, surgeries, etc. They are tough, they effect a child's life, but I'm here to assure you...your child is strong and will make it through each of them as they are meant to.I know what you mean about always feeling that empathy for preemies even though Max was not a preemie. I was a preemie (born at 24 weeks), so I too have that connection. For me, that empathy comes more from seeing my own experiences possibly play out in the life of another child, experiences that I have no recollection of and that I will probably never have the courage to ask my parents honest questions about. Now that I am an adult, that empathetic connection comes in the form of thinking about preemies now, the technology that medicine has to give them such a great shot at high quality of life. And it also comes in the form of thinking about my own children I someday hope to have. Will I have a preemie child myself, will I watch them struggle in some of the same ways I have, or--perhaps even more strongly weighing on my heart--will I be upset and even slightly jealous if my child learns to walk within their first year of life, while I am still trying at age 22, will they surpass their own mom in milestones?I don't know what so many of you face daily as parents of children with special needs, but I do know we are all connected--parent and child alike, and you can bet I'll be DVRing and watching along with all of you in my community tonight!
I hope you all tune in, or DVR the premeire tonight on Discovery Health at 10 PM ET and PT.
Oh, and, Ellen said I should be a guest poster on her blog, which is pretty darn exciting!! :)
This week is Babies Week on Discovery Health Channel, and they are premiering a new show called NICU following 3 top Neonatal Intensive Care units in the country. This show is pretty exciting for those of us in the special needs community, because it showcases the beginnings of life which so many of us have experience with (preemies, trauma at birth, etc.) I invite you all to read Ellen's post about the NICU experience and the connection we all share before continuing on with my post here, because I can't do it justice...
Did you finish reading yet??
Really, I meant it, go read the post.
Okay, you should be done now! This post really touched me, for the obvious reasons, and because everything that Ellen talked about knowing as a mother of a child with special needs, I can say I have also felt or known growing up with CP. This is what I said in response to Ellen's post. I don't think I could say it this way if I tried it again, so I'm just going to paste it in.
I know that a lot of parents read this blog, so on a post that touches so many of you, I thought maybe I'd share a "child's" perspective...I'm not a parent of a child with special needs. I am a child with special needs. Well, more an adult now, but every one of those things you mentioned that you know as a parent of a child with CP, I can honestly say I know each of those too, having CP. It's obviously very different for a parent than it is for a child. I don't remember a lot of what would have probably been the "tougher" times for my parents, but I do remember my own thoughts of doctors visits, surgeries, etc. They are tough, they effect a child's life, but I'm here to assure you...your child is strong and will make it through each of them as they are meant to.I know what you mean about always feeling that empathy for preemies even though Max was not a preemie. I was a preemie (born at 24 weeks), so I too have that connection. For me, that empathy comes more from seeing my own experiences possibly play out in the life of another child, experiences that I have no recollection of and that I will probably never have the courage to ask my parents honest questions about. Now that I am an adult, that empathetic connection comes in the form of thinking about preemies now, the technology that medicine has to give them such a great shot at high quality of life. And it also comes in the form of thinking about my own children I someday hope to have. Will I have a preemie child myself, will I watch them struggle in some of the same ways I have, or--perhaps even more strongly weighing on my heart--will I be upset and even slightly jealous if my child learns to walk within their first year of life, while I am still trying at age 22, will they surpass their own mom in milestones?I don't know what so many of you face daily as parents of children with special needs, but I do know we are all connected--parent and child alike, and you can bet I'll be DVRing and watching along with all of you in my community tonight!
I hope you all tune in, or DVR the premeire tonight on Discovery Health at 10 PM ET and PT.
Oh, and, Ellen said I should be a guest poster on her blog, which is pretty darn exciting!! :)
Saturday, October 10, 2009
The fight of your life.
So, I needed a one credit class to fulfill some requirements this semester and decided to take a 5.5 week Advanced Editing and Revising course. I've always loved to write, but never really knew what to do with my writing. I figured this class would be a fun distraction from the rigors of all my other courses and give me time to do something that I love, but never get a chance to do. We had one assignment over the five weeks. We wrote one paper based on a metaphor and use of conceptual blending--basically trying to convince people that the metaphor is best through the use of language. I don't necessarily know why I feel the need to post this to the blog, but I'm extremely proud of it, and it's been so long since I actually sat down to blog (even if I only have one loyal reader! :))I'll appologize now for the length, but I couldn't figure out how to post the actual document, so if anyone knows how to do this, feel free to let me know. Happy reading!:) Hope you all enjoy it!
This has been years in the making. She’s waited for it for longer than most people even care to think about. Everything around her has become quiet and the only thing that she can feel is the beat of her own heart and the movement of her legs beneath her as they start to journey into the unknown ahead. She is shaking, but it is the good kind of shaking, if there is such a thing. As she lets go of all her inhibitions, everything starts to come together. Her goal is going to be accomplished and she’s finally going to get her gift that everyone has been telling her about. She steadies herself and takes one jagged, off-balance step forward with her left leg. The right follows directly behind. Okay, sure, people complete this task every day, hundreds of times a day. You see however, this young girl has Cerebral Palsy, a neurological disorder in which messages from her brain often do not get sent to other parts of her body correctly. These small movements are huge to her. They are nothing short of life-changing and incredible. She exhales and begins to realize what just took place. Every joyous emotion seizes hold of her body and she can’t help but let out her excitement. “It’s finally over. I’ve finally won this battle. I’ve finally done it. My gift is here!” She’s taken steps by herself. This moment is one that almost everyone told her would never happen. It seems like nothing could compare to the mentally and spiritually grounding gift this accomplishment has provided her with. As those words leave her lips, she takes the box that is presented to her, a physical token of her accomplishment given to her by her physical therapist. She removes the lid and starts to search through the box for this gift that he has been telling her about for so long. The environment around her begins to shift. The box is empty, but she keeps going farther and farther to the bottom, determined to see what it could be. As quickly as it began, it’s slipping away. “I don’t understand”, she yells. “Where is this amazing gift you’ve been telling me about for five years?” There is no answer coming from her physical therapist. In fact, there is no one around to even answer her. She looks around and the only person she’s left with is herself. She’s standing in her walker yet again. Staring down into the box, searching one last time for an answer, she can’t even see the bottom. All of the sudden, the truth hits her, a swift left hook to the jaw. She has been fed the wrong information all these years. This isn’t a true gift she’s received at all. This is a boxing match. She thought she’d reached the end, but that was only the first round and no one really knows just how long this match will last. She doesn’t even know how she got here.
A girl sits in the locker room, a patient waiting to be called into the doctor’s office. She has never felt more alone in her head, even with all the people circling around her, there for the same reason. They’re all going to be a part of this fight in some way or another. She tries to focus on the video tape playing a few feet away from her, the packets of information being handed over to her parents from the orthopedic doctor, the man who will be coaching her through this fight for the rest of her life. Over and over again she watches her opponent on the screen trying, unsuccessfully, to make sense of the brain scans that are up against the wall and have mapped out the list of fights she will compete in for the rest of her life, trying to plan how she can stand up to the challenge that is about to be placed in front of her. The statistics are being fed to her by the coaches around her. “Many people are faced with this fight,” they say, “and many, if not all will win, but not without a lot of hard work, sacrifice, and mental and physical agony.”
Close your eyes. Just take a moment and imagine a famous fight. Any fight is fine, but for me it’s Frazier vs. Ali, their first fight. It’s the fifteenth round and both men are clearly looking beaten down. There are about two minutes left in the fight and Frazier knocks Ali to the ground—the first time for the entire fight. Ali looks physically and mentally shaken. He is staggering back and forth as if he is combating some sort of seasick feeling. He is sweating enough to fill up his water bottles and seems to be arguing to himself, trying to shake off all the pain he is in. He is thrown fiercely back into the reality that he may not be the stronger man in this fight after all. That is what it is like for this prized fighter as she replays the statistics over in her head. It is in that moment of heading back to reality that she begins to see the differences. Her world moves a little slower, a bit more off balance. With that realization, the boxer slowly enters the ring. She now is accepting the fact that this fight may not be a fair one, but there is no way that she can just give up and let the referee count her out. She is shrinking under the weight of her losses; clearly the underdog, but ready for one last round…or so it seems.
There is constant sparring going on in her mind. “Do I give up or keep fighting?” “They all said I would never amount to anything.” “My brain is telling me I’m not strong enough to handle these punches, but my heart says I’m ready for anything. Which do I choose?” She finds herself constantly in motion, the boxer’s shuffle, moving back and forth between the past and the present with each punch thrown at her, each unsteady head feint her body must make to get away from her past as quickly as possible. As she struggles into the ring, she remembers the fight she’s faced each day of her life; a different battle, but one just as demanding. The microphone drops from the ceiling, and the ring announcer’s words shake the girl and the crowd, those that are always on the sideline of her life, wanting to lend a steadying hand when she is falling down, but just the slightest bit out of reach. They see the signs scrawled all over the face of the boxer, but they do not want to believe them. The familiar sound of her doctor’s voice comes over the room as they all hear “In the far corner, wearing blue, we have Cracking Perfection. Weighing in at 6 feet tall, 1 ton, it has a near perfect record with only one loss.” This may seem like it is a quite large size for the average fighter, but that is because CP looks average. These statistics, its monstrous size, are hidden and no one would know had they not been read out loud. Another hidden problem of CP is that even that one loss wasn’t really a full loss, because it was still constantly with the other fighter, so it was marked a no contest. This other fighter showed signs of being taken down by Cracking Perfection, but ended up being transported into another boxing ring and facing a different diagnosis. The highlight reel rolls across the Jumbotron, the patient being observed by her team of doctors as she walks down the hall, for the crowd, and the announcer’s voice comes back. “Now get ready for a clean, but hard fight.” The tale of the tape has been spoken for everyone in the arena to hear. The opponent, previously masked by shadows, finally emerges and becomes clear. He is rough and rugged. He doesn’t look quite as large as she imagined, but she’s heard the stories. She knows that all it takes is a look into his smoky grey eyes and all the fight will be unleashed within him.
Getting ready to face the fight, she wants to feel strong and assured. In her mind she does. In that place deep down inside of her, she believes she just may have a chance. However, in her body, a completely different story is being told. She steps into her walker, a boxer leaning against the ropes for one last encouragement and sense of stability. Most of the time, she lives her life with careful and detailed planning, making sure that she knows at least two steps ahead of where her life is headed, but sometimes she enjoys going on instinct. She enjoys the challenge of putting her heart and soul out there, as she is doing in the ring, and seeing what will come next. This is what happens next. She throws a left jab, the impulsive thought of how great her life would be if she could be rid of Cerebral Palsy, if only for one day. But she must accept the consequences of her actions, not anticipating her opponent’s next move well enough before executing. With that, her disability—the Frazier to her Ali—her opponent quickly and effortlessly counters, knocking her to the ground.
This fight has always been different for her. There was no training involved in this fight. She did not choose her opponent or to fight at all. She was simply thrown in the ring, guard down, hoping for the best. It must be made clear that, even though there are times when she may seclude herself or feel as though she’s alone, she has never truly been alone in this fight. She’s been going to physical therapy since she was a year old, the conditioning to try and maintain her abilities, but not formal training. Her physical therapists, the corner men giving her tips and pushing her every step of the way, were the only people she felt most trusting of, and even that was never one hundred percent.
Her parents, the more reserved of the spectators, the fans watching her fight on television from the comfort of their own couches, had chosen to step back for her own protection. She knew they were there, but didn’t always need to be in the forefront to feel supported. They knew how easily she would anger if she knew they were getting excited over every punch thrown. For this reason they’d find themselves only cheering when they knew she couldn’t really hear, careful not to break her concentration or push her too much into her harsh reality that every punch she threw was really that big of a victory. She didn’t want to think about how truly tough this was. She just wanted to fight and win.
The obnoxiously loud roar of the crowd draws her out of her internal reflection and back into the moment. In each scream, boast, and encouraging word, she can hear the distinct voices of each one of her friends—her ringside supporters. Some are the ones that have been there for every punch, kick, laugh, cry; and others have been the referees in the ring, literally picking her up many times after getting knocked down. This has happened more times than she can count. There were times on the playground when she thought she would try the jungle gym just like the rest of her peers. Then there were the more figurative times like in fourth grade when she found out she had to have another hip derotation surgery because the first one was ineffective. They’ve been there for her to wipe her gloves off on and take a standing eight count to get settled. It is through each of these spectators, whether on television or in person, that she finds it in herself to continue to come back and face this fight again and again. You see, there is a catch here. This may be the final round in her match, but she relives that final round day in and day out. Each new day is a new final round, and it doesn’t look like the final bell will ring anytime soon.
Many of my own experiences are intertwined within this fighter’s story. In fact, I am the fighter. For me, the true pain displayed in the ring is real. It is rough and raw. There are many more times of pain and anguish than there are of joy and excitement, but the sacrifice and conditioning and tears you put into those painful times make the rewards of accomplishing the goal that much sweeter whether it is simply making it through the day, or taking your first steps at twenty-one years old. For some people though, this metaphor is a little bit too honest. It’s a little bit too much of a test for the fairytale world people want to live in. Individuals living in this world, tend to live by the misguided belief “Living life with a disability is a gift.” This misconception comes from a more societal perspective of looking at a disability than an individual perspective. The disabled community often hears that you can use having a disability to show your true strength and personality in overcoming adversity, which might be a very convincing point if it weren’t for one glaring fallacy—this statement is often said by people who do not, themselves, have a disability. Many of these people may not even know someone who has a disability at all. This phrase, many times, can be traced back and based on faith. For example, certain Christian denominations such as Catholicism often look at challenges like disabilities as a grace from God that is given to show others how their God loves all people and creates everyone in these unique and amazing ways because they all have something special to offer the world around them (Zach, 2009). Many articles and disability blogs have had posts that cited their reasons for feeling this way were that it was important to stay in touch with their limitations so as not to act too high and mighty and that they were better than other people.
Also, many who have faith of some type believe that is it extremely important to be strong and determined in going out and putting everything you have into something you believe fully in, as well as yourself. Though sometimes I may doubt that view, I also count myself as one of those individuals. I live by the idea that nothing matters more than that one piece of your life you can’t see yourself living without and you must do everything in your power to always make sure it is within your grasp, even if you end up bruised, beaten, and battered in the process. These people know that, within a weakness lies an even more powerful strength. Again, one of the stronger places that this was shown through others was through the repeated posting of one Bible passage. It comes from 2 Corinthians 12: 9 and goes as follows: “But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness.” (New International Version, 2002). For some people, this is enough of an explanation—to know that in their weakness, God will be there for them and make them strong.
I will pose the question to you, though it is not one that, under normal circumstances, you would normally have a choice to answer. Which of these metaphoric representations would you choose to believe and regard as truth? Which of these explanations has more to offer? Just think about which sounds more interesting on the surface, a disability as a gift or a disability as a boxing match? Sure gifts are great. They are shiny and mysterious and are fun to unwrap but, they are also safe. After you open a gift, what do you do? You put it on or play with it a few times and then it sits in the bottom of your closet for years. Boxing matches, on the other hand, are full of possibilities. There is constant action, unpredictability, and a sense of adventure and rush of adrenaline whether you are a participant or a spectator. I’ll pose the question again. Which of these explanations has more to offer? Where can you see yourself? The boxing match? I had a hunch that’d be your answer which leaves us to deduce that the metaphor “Living life with a disability is like the final round in a boxing match” fits much more accurately. A disability like Cerebral Palsy that this fighter was given is not a Christmas or birthday gift from your great aunt Helen that can be returned or traded in if it is ugly or doesn’t fit you right. It stays with you through every knockout fight, dizzying punch, and agonizing defeat. Cerebral Palsy is not something that you can hide away in the closet until it has a purpose. In fact, there is no hiding it at all. It cannot be masked by big muscles or the fighter’s robe. It is one disability in the bunch that is almost always going to be visible to the eye of any passerby. The patient’s walker, wheelchair, or cane giving away the deficit, a Band-Aid covering Holyfield’s gnawed off ear. And let’s not all forget that generally, as children, we ask for gifts that we want to receive. We carefully choose from the catalogs and construct our ideal lists to give our parents. I’m pretty sure I have never seen a one-year-old child say to her mother, “I’d like to have Cerebral Palsy for my birthday. Pretty please Mom.” If we, as a disabled community, really wanted to face these challenges every day, all we would do is strip ourselves of all assistive devices or aids we need and see just how far we could make it and how long our strength would hold us.
Here we are again, watching the boxer in the ring face her seasoned, rugged, and unforgiving opponent—Cerebral Palsy. It all seems like the perfect scene out of a Rocky film, until you start thinking about the logistics of the fight unfolding before your eyes. Boxers are trained and competitive athletes who spend hours upon hours in the gym working for a something they chose to be a part of. While this boxer may be a diligent physical therapy patient when she trains now, she did not voluntarily enter into this training. She did not know it was going to literally take the wind out of her many times. She had this training thrust upon her in the form of weekly stretching and bodily manipulation. Every week, twice a week, for one hour a day, she would be poked and prodded by her coaches, all in the name of making her “better”. They would take measurements of her abilities and tell her areas in which she was lacking. Then, as if they would always be right beside her forever, they would give her the ever so reassuring, “Don’t worry, it can only get better from here. We’ll make it work.” And send her out the door to face everything again. This would be intimidating to anyone, let alone a young girl.
A startling noise erupts from the crowd and she is drawn out of logical thinking and back into the ring. She is forced back into this fight, both physically and mentally, that does not seem to be letting up. Cerebral Palsy presents the awkward dilemma of our legs not working in conjunction with our brain on a minute-by-minute basis. In the literal sense, type of physical confusion presents itself almost exactly the same in the boxing ring and that is why the crowd is on their feet right now. The boxer just took a punch directly to the chin. Scientifically speaking, her brain has been recoiled against the back of her skull then immediately against the front. This causes a double reaction of neurons firing and failing to receive the proper message due to overload (Rose, 2008). She staggers backwards trying to shake it off, but is unsuccessful and finds herself spiraling down onto the floor of the ring. Our fighter has “lost her legs”. That is, her brain cannot get the messages across to have strength in her legs to stand up, causing her to fall immediately to the ground and lose her focus physically and mentally. Cerebral Palsy has just gained momentum over the boxer in one of the harshest ways possible. With that staggering determination that she must always display, she drags herself to her feet, using the ropes, her main assistive device, the walker, for her strength and support along the way.
The fight continues to unfold, the boxer getting beaten down with every punch, and all the spectators are watching in some sort of awe. You can see the confusion on their faces. One friend shouts, “Wait a minute. What about the three knockdown rule?” That’s just it. There is no three knockdown rule in the fight with Cerebral Palsy. No matter how many times she gets knocked down, she must always get back up. She is not like any other boxer, and this is not like any other fight. She cannot choose to give in and surrender. She cannot just walk away from the fight and hope for better luck next time. This thought angers our fighter more than you could even imagine. “How could I be so easily defeated?” she asks herself. “That is not the type of person I am. That is not the type of person I ever want to be.” This anger and determination unleashes a drive within her that she has experienced in only one other setting—her physical therapy clinic. Almost instinctively, she throws repeated one-two punches directly at the sides of Cracked Perfection’s rugged face. Unexpectedly, he is shaken by this sudden change of defense tactics and can’t withstand the pressure. He falls to the ground and, before she can realize what just happened, the referee counts to ten and raises her hand in the air declaring her the winner of this fight. The fighter does not believe it. She’s beaten the odds and won the fight against one of the toughest opponents out there. The crowd around her lets out a loud roar of approval. The smile on her face is not unlike the ones you see on the faces of just married couples or new parents. The smile stretches as wide as possible.
The fighter leaves the ring and walks down the narrow hallway toward the locker room, her reentry into a world where there aren’t quite as many barriers, a “normal” world for most others. She is surrounded by flocks of people from the spectators of her family and friend, to reporters who become the doubters, to hear doctors and physical therapists who have coached her along the way. She finally reaches the door to her locker room. All she can think about is the ice bath waiting for her and the trainer who will be waiting to dress her wounds. As she opens the door, she knows something is not right. This can’t be happening. As the door opens fully she sees that this is not her locker room. Instead, she faces another arena no different than the one she just left. She takes a step through the door and it all becomes clear. She must fight again. Though the victory has given her an amazing emotional high, it doesn’t much matter that she won the fight today. No matter the outcome, she will face the same fight tomorrow and every day for the rest of her life.
Up until this point, or maybe a few pages back, this entire story board playing out on the page; the boxing match before you, may not have seemed like all that big of a deal. It’s just another sob story. It’s somewhere between the story of another Rocky Balboa trying to overcome insurmountable odds and getting caught in the shuffle and the dramatic story with the predictable happy ending through hard work and determination. However, it’s not just that. It is much more than for the girl whose fingers are grazing the keyboard; opening her heart a little more with each word on the page. For her, it is putting truth to the thoughts, feelings, and actions that she must hide all too often because they don’t quite fit with the way everyone would like to envision her life and the way she chooses to live it. For her, it’s a plea to society to try and become even the slightest bit more aware and empathetic to the struggles and obstacles that the disabled community must face every day of their lives, with no choice but to keep fighting. That is why this boxing match is so important to her. She hopes beyond all hope that it will not only move her along on her journey through life, but also help move someone else along that might be stuck in a boxing match of their own, whoever the opponent happens to be. It is the cancer patient sparring with one last round of chemotherapy treatment. It is the young man diagnosed with clinical depression constantly ducking from and fighting with his mood swings. Within these ropes surrounding the ring lies a unique and strong hope. It is a hope that, one day, the tale of the tape will tell the real truth and will, once and for all, be in her corner and in the corners of all those in her world.
This has been years in the making. She’s waited for it for longer than most people even care to think about. Everything around her has become quiet and the only thing that she can feel is the beat of her own heart and the movement of her legs beneath her as they start to journey into the unknown ahead. She is shaking, but it is the good kind of shaking, if there is such a thing. As she lets go of all her inhibitions, everything starts to come together. Her goal is going to be accomplished and she’s finally going to get her gift that everyone has been telling her about. She steadies herself and takes one jagged, off-balance step forward with her left leg. The right follows directly behind. Okay, sure, people complete this task every day, hundreds of times a day. You see however, this young girl has Cerebral Palsy, a neurological disorder in which messages from her brain often do not get sent to other parts of her body correctly. These small movements are huge to her. They are nothing short of life-changing and incredible. She exhales and begins to realize what just took place. Every joyous emotion seizes hold of her body and she can’t help but let out her excitement. “It’s finally over. I’ve finally won this battle. I’ve finally done it. My gift is here!” She’s taken steps by herself. This moment is one that almost everyone told her would never happen. It seems like nothing could compare to the mentally and spiritually grounding gift this accomplishment has provided her with. As those words leave her lips, she takes the box that is presented to her, a physical token of her accomplishment given to her by her physical therapist. She removes the lid and starts to search through the box for this gift that he has been telling her about for so long. The environment around her begins to shift. The box is empty, but she keeps going farther and farther to the bottom, determined to see what it could be. As quickly as it began, it’s slipping away. “I don’t understand”, she yells. “Where is this amazing gift you’ve been telling me about for five years?” There is no answer coming from her physical therapist. In fact, there is no one around to even answer her. She looks around and the only person she’s left with is herself. She’s standing in her walker yet again. Staring down into the box, searching one last time for an answer, she can’t even see the bottom. All of the sudden, the truth hits her, a swift left hook to the jaw. She has been fed the wrong information all these years. This isn’t a true gift she’s received at all. This is a boxing match. She thought she’d reached the end, but that was only the first round and no one really knows just how long this match will last. She doesn’t even know how she got here.
A girl sits in the locker room, a patient waiting to be called into the doctor’s office. She has never felt more alone in her head, even with all the people circling around her, there for the same reason. They’re all going to be a part of this fight in some way or another. She tries to focus on the video tape playing a few feet away from her, the packets of information being handed over to her parents from the orthopedic doctor, the man who will be coaching her through this fight for the rest of her life. Over and over again she watches her opponent on the screen trying, unsuccessfully, to make sense of the brain scans that are up against the wall and have mapped out the list of fights she will compete in for the rest of her life, trying to plan how she can stand up to the challenge that is about to be placed in front of her. The statistics are being fed to her by the coaches around her. “Many people are faced with this fight,” they say, “and many, if not all will win, but not without a lot of hard work, sacrifice, and mental and physical agony.”
Close your eyes. Just take a moment and imagine a famous fight. Any fight is fine, but for me it’s Frazier vs. Ali, their first fight. It’s the fifteenth round and both men are clearly looking beaten down. There are about two minutes left in the fight and Frazier knocks Ali to the ground—the first time for the entire fight. Ali looks physically and mentally shaken. He is staggering back and forth as if he is combating some sort of seasick feeling. He is sweating enough to fill up his water bottles and seems to be arguing to himself, trying to shake off all the pain he is in. He is thrown fiercely back into the reality that he may not be the stronger man in this fight after all. That is what it is like for this prized fighter as she replays the statistics over in her head. It is in that moment of heading back to reality that she begins to see the differences. Her world moves a little slower, a bit more off balance. With that realization, the boxer slowly enters the ring. She now is accepting the fact that this fight may not be a fair one, but there is no way that she can just give up and let the referee count her out. She is shrinking under the weight of her losses; clearly the underdog, but ready for one last round…or so it seems.
There is constant sparring going on in her mind. “Do I give up or keep fighting?” “They all said I would never amount to anything.” “My brain is telling me I’m not strong enough to handle these punches, but my heart says I’m ready for anything. Which do I choose?” She finds herself constantly in motion, the boxer’s shuffle, moving back and forth between the past and the present with each punch thrown at her, each unsteady head feint her body must make to get away from her past as quickly as possible. As she struggles into the ring, she remembers the fight she’s faced each day of her life; a different battle, but one just as demanding. The microphone drops from the ceiling, and the ring announcer’s words shake the girl and the crowd, those that are always on the sideline of her life, wanting to lend a steadying hand when she is falling down, but just the slightest bit out of reach. They see the signs scrawled all over the face of the boxer, but they do not want to believe them. The familiar sound of her doctor’s voice comes over the room as they all hear “In the far corner, wearing blue, we have Cracking Perfection. Weighing in at 6 feet tall, 1 ton, it has a near perfect record with only one loss.” This may seem like it is a quite large size for the average fighter, but that is because CP looks average. These statistics, its monstrous size, are hidden and no one would know had they not been read out loud. Another hidden problem of CP is that even that one loss wasn’t really a full loss, because it was still constantly with the other fighter, so it was marked a no contest. This other fighter showed signs of being taken down by Cracking Perfection, but ended up being transported into another boxing ring and facing a different diagnosis. The highlight reel rolls across the Jumbotron, the patient being observed by her team of doctors as she walks down the hall, for the crowd, and the announcer’s voice comes back. “Now get ready for a clean, but hard fight.” The tale of the tape has been spoken for everyone in the arena to hear. The opponent, previously masked by shadows, finally emerges and becomes clear. He is rough and rugged. He doesn’t look quite as large as she imagined, but she’s heard the stories. She knows that all it takes is a look into his smoky grey eyes and all the fight will be unleashed within him.
Getting ready to face the fight, she wants to feel strong and assured. In her mind she does. In that place deep down inside of her, she believes she just may have a chance. However, in her body, a completely different story is being told. She steps into her walker, a boxer leaning against the ropes for one last encouragement and sense of stability. Most of the time, she lives her life with careful and detailed planning, making sure that she knows at least two steps ahead of where her life is headed, but sometimes she enjoys going on instinct. She enjoys the challenge of putting her heart and soul out there, as she is doing in the ring, and seeing what will come next. This is what happens next. She throws a left jab, the impulsive thought of how great her life would be if she could be rid of Cerebral Palsy, if only for one day. But she must accept the consequences of her actions, not anticipating her opponent’s next move well enough before executing. With that, her disability—the Frazier to her Ali—her opponent quickly and effortlessly counters, knocking her to the ground.
This fight has always been different for her. There was no training involved in this fight. She did not choose her opponent or to fight at all. She was simply thrown in the ring, guard down, hoping for the best. It must be made clear that, even though there are times when she may seclude herself or feel as though she’s alone, she has never truly been alone in this fight. She’s been going to physical therapy since she was a year old, the conditioning to try and maintain her abilities, but not formal training. Her physical therapists, the corner men giving her tips and pushing her every step of the way, were the only people she felt most trusting of, and even that was never one hundred percent.
Her parents, the more reserved of the spectators, the fans watching her fight on television from the comfort of their own couches, had chosen to step back for her own protection. She knew they were there, but didn’t always need to be in the forefront to feel supported. They knew how easily she would anger if she knew they were getting excited over every punch thrown. For this reason they’d find themselves only cheering when they knew she couldn’t really hear, careful not to break her concentration or push her too much into her harsh reality that every punch she threw was really that big of a victory. She didn’t want to think about how truly tough this was. She just wanted to fight and win.
The obnoxiously loud roar of the crowd draws her out of her internal reflection and back into the moment. In each scream, boast, and encouraging word, she can hear the distinct voices of each one of her friends—her ringside supporters. Some are the ones that have been there for every punch, kick, laugh, cry; and others have been the referees in the ring, literally picking her up many times after getting knocked down. This has happened more times than she can count. There were times on the playground when she thought she would try the jungle gym just like the rest of her peers. Then there were the more figurative times like in fourth grade when she found out she had to have another hip derotation surgery because the first one was ineffective. They’ve been there for her to wipe her gloves off on and take a standing eight count to get settled. It is through each of these spectators, whether on television or in person, that she finds it in herself to continue to come back and face this fight again and again. You see, there is a catch here. This may be the final round in her match, but she relives that final round day in and day out. Each new day is a new final round, and it doesn’t look like the final bell will ring anytime soon.
Many of my own experiences are intertwined within this fighter’s story. In fact, I am the fighter. For me, the true pain displayed in the ring is real. It is rough and raw. There are many more times of pain and anguish than there are of joy and excitement, but the sacrifice and conditioning and tears you put into those painful times make the rewards of accomplishing the goal that much sweeter whether it is simply making it through the day, or taking your first steps at twenty-one years old. For some people though, this metaphor is a little bit too honest. It’s a little bit too much of a test for the fairytale world people want to live in. Individuals living in this world, tend to live by the misguided belief “Living life with a disability is a gift.” This misconception comes from a more societal perspective of looking at a disability than an individual perspective. The disabled community often hears that you can use having a disability to show your true strength and personality in overcoming adversity, which might be a very convincing point if it weren’t for one glaring fallacy—this statement is often said by people who do not, themselves, have a disability. Many of these people may not even know someone who has a disability at all. This phrase, many times, can be traced back and based on faith. For example, certain Christian denominations such as Catholicism often look at challenges like disabilities as a grace from God that is given to show others how their God loves all people and creates everyone in these unique and amazing ways because they all have something special to offer the world around them (Zach, 2009). Many articles and disability blogs have had posts that cited their reasons for feeling this way were that it was important to stay in touch with their limitations so as not to act too high and mighty and that they were better than other people.
Also, many who have faith of some type believe that is it extremely important to be strong and determined in going out and putting everything you have into something you believe fully in, as well as yourself. Though sometimes I may doubt that view, I also count myself as one of those individuals. I live by the idea that nothing matters more than that one piece of your life you can’t see yourself living without and you must do everything in your power to always make sure it is within your grasp, even if you end up bruised, beaten, and battered in the process. These people know that, within a weakness lies an even more powerful strength. Again, one of the stronger places that this was shown through others was through the repeated posting of one Bible passage. It comes from 2 Corinthians 12: 9 and goes as follows: “But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness.” (New International Version, 2002). For some people, this is enough of an explanation—to know that in their weakness, God will be there for them and make them strong.
I will pose the question to you, though it is not one that, under normal circumstances, you would normally have a choice to answer. Which of these metaphoric representations would you choose to believe and regard as truth? Which of these explanations has more to offer? Just think about which sounds more interesting on the surface, a disability as a gift or a disability as a boxing match? Sure gifts are great. They are shiny and mysterious and are fun to unwrap but, they are also safe. After you open a gift, what do you do? You put it on or play with it a few times and then it sits in the bottom of your closet for years. Boxing matches, on the other hand, are full of possibilities. There is constant action, unpredictability, and a sense of adventure and rush of adrenaline whether you are a participant or a spectator. I’ll pose the question again. Which of these explanations has more to offer? Where can you see yourself? The boxing match? I had a hunch that’d be your answer which leaves us to deduce that the metaphor “Living life with a disability is like the final round in a boxing match” fits much more accurately. A disability like Cerebral Palsy that this fighter was given is not a Christmas or birthday gift from your great aunt Helen that can be returned or traded in if it is ugly or doesn’t fit you right. It stays with you through every knockout fight, dizzying punch, and agonizing defeat. Cerebral Palsy is not something that you can hide away in the closet until it has a purpose. In fact, there is no hiding it at all. It cannot be masked by big muscles or the fighter’s robe. It is one disability in the bunch that is almost always going to be visible to the eye of any passerby. The patient’s walker, wheelchair, or cane giving away the deficit, a Band-Aid covering Holyfield’s gnawed off ear. And let’s not all forget that generally, as children, we ask for gifts that we want to receive. We carefully choose from the catalogs and construct our ideal lists to give our parents. I’m pretty sure I have never seen a one-year-old child say to her mother, “I’d like to have Cerebral Palsy for my birthday. Pretty please Mom.” If we, as a disabled community, really wanted to face these challenges every day, all we would do is strip ourselves of all assistive devices or aids we need and see just how far we could make it and how long our strength would hold us.
Here we are again, watching the boxer in the ring face her seasoned, rugged, and unforgiving opponent—Cerebral Palsy. It all seems like the perfect scene out of a Rocky film, until you start thinking about the logistics of the fight unfolding before your eyes. Boxers are trained and competitive athletes who spend hours upon hours in the gym working for a something they chose to be a part of. While this boxer may be a diligent physical therapy patient when she trains now, she did not voluntarily enter into this training. She did not know it was going to literally take the wind out of her many times. She had this training thrust upon her in the form of weekly stretching and bodily manipulation. Every week, twice a week, for one hour a day, she would be poked and prodded by her coaches, all in the name of making her “better”. They would take measurements of her abilities and tell her areas in which she was lacking. Then, as if they would always be right beside her forever, they would give her the ever so reassuring, “Don’t worry, it can only get better from here. We’ll make it work.” And send her out the door to face everything again. This would be intimidating to anyone, let alone a young girl.
A startling noise erupts from the crowd and she is drawn out of logical thinking and back into the ring. She is forced back into this fight, both physically and mentally, that does not seem to be letting up. Cerebral Palsy presents the awkward dilemma of our legs not working in conjunction with our brain on a minute-by-minute basis. In the literal sense, type of physical confusion presents itself almost exactly the same in the boxing ring and that is why the crowd is on their feet right now. The boxer just took a punch directly to the chin. Scientifically speaking, her brain has been recoiled against the back of her skull then immediately against the front. This causes a double reaction of neurons firing and failing to receive the proper message due to overload (Rose, 2008). She staggers backwards trying to shake it off, but is unsuccessful and finds herself spiraling down onto the floor of the ring. Our fighter has “lost her legs”. That is, her brain cannot get the messages across to have strength in her legs to stand up, causing her to fall immediately to the ground and lose her focus physically and mentally. Cerebral Palsy has just gained momentum over the boxer in one of the harshest ways possible. With that staggering determination that she must always display, she drags herself to her feet, using the ropes, her main assistive device, the walker, for her strength and support along the way.
The fight continues to unfold, the boxer getting beaten down with every punch, and all the spectators are watching in some sort of awe. You can see the confusion on their faces. One friend shouts, “Wait a minute. What about the three knockdown rule?” That’s just it. There is no three knockdown rule in the fight with Cerebral Palsy. No matter how many times she gets knocked down, she must always get back up. She is not like any other boxer, and this is not like any other fight. She cannot choose to give in and surrender. She cannot just walk away from the fight and hope for better luck next time. This thought angers our fighter more than you could even imagine. “How could I be so easily defeated?” she asks herself. “That is not the type of person I am. That is not the type of person I ever want to be.” This anger and determination unleashes a drive within her that she has experienced in only one other setting—her physical therapy clinic. Almost instinctively, she throws repeated one-two punches directly at the sides of Cracked Perfection’s rugged face. Unexpectedly, he is shaken by this sudden change of defense tactics and can’t withstand the pressure. He falls to the ground and, before she can realize what just happened, the referee counts to ten and raises her hand in the air declaring her the winner of this fight. The fighter does not believe it. She’s beaten the odds and won the fight against one of the toughest opponents out there. The crowd around her lets out a loud roar of approval. The smile on her face is not unlike the ones you see on the faces of just married couples or new parents. The smile stretches as wide as possible.
The fighter leaves the ring and walks down the narrow hallway toward the locker room, her reentry into a world where there aren’t quite as many barriers, a “normal” world for most others. She is surrounded by flocks of people from the spectators of her family and friend, to reporters who become the doubters, to hear doctors and physical therapists who have coached her along the way. She finally reaches the door to her locker room. All she can think about is the ice bath waiting for her and the trainer who will be waiting to dress her wounds. As she opens the door, she knows something is not right. This can’t be happening. As the door opens fully she sees that this is not her locker room. Instead, she faces another arena no different than the one she just left. She takes a step through the door and it all becomes clear. She must fight again. Though the victory has given her an amazing emotional high, it doesn’t much matter that she won the fight today. No matter the outcome, she will face the same fight tomorrow and every day for the rest of her life.
Up until this point, or maybe a few pages back, this entire story board playing out on the page; the boxing match before you, may not have seemed like all that big of a deal. It’s just another sob story. It’s somewhere between the story of another Rocky Balboa trying to overcome insurmountable odds and getting caught in the shuffle and the dramatic story with the predictable happy ending through hard work and determination. However, it’s not just that. It is much more than for the girl whose fingers are grazing the keyboard; opening her heart a little more with each word on the page. For her, it is putting truth to the thoughts, feelings, and actions that she must hide all too often because they don’t quite fit with the way everyone would like to envision her life and the way she chooses to live it. For her, it’s a plea to society to try and become even the slightest bit more aware and empathetic to the struggles and obstacles that the disabled community must face every day of their lives, with no choice but to keep fighting. That is why this boxing match is so important to her. She hopes beyond all hope that it will not only move her along on her journey through life, but also help move someone else along that might be stuck in a boxing match of their own, whoever the opponent happens to be. It is the cancer patient sparring with one last round of chemotherapy treatment. It is the young man diagnosed with clinical depression constantly ducking from and fighting with his mood swings. Within these ropes surrounding the ring lies a unique and strong hope. It is a hope that, one day, the tale of the tape will tell the real truth and will, once and for all, be in her corner and in the corners of all those in her world.
Friday, July 3, 2009
Pardon The...Introduction
So, almost exactly 7 months after making my New Year's Resolution to start a blog, I'm finally getting around to it. I'm not really sure what's going to come of it, or if I'll even have any readers, but it's worth a try. There's no real set topic, or point, to my blogging, I guess. Just wanting to get some random thoughts on the page and maybe entertain and inspire someone along the way...so prepare yourselves.
I suppose I should start out with an introduction of sorts. I'm Molly, I'm a senior in college, and I may or my not have a disability. That's up to you to decide as you read along in my future posts. Okay, yeah, I have Spastic Diplegic Cerebral Palsy, or CP. I was diagnosed when I was a year old, and haven't had a day off since. That's a lot of days, you can do the math if you really care. The reason I pose it to you as a question, if there is anyone even reading this, is because it would be almost impossible to realize if you didn't know me or see e walking past you down the street. At the risk of sounding confident, I am a very bright person. I get around almost entirely on my own, I take classes, live at school during the year...you get the point. I may have Cerebral Palsy, but I try my damnedest to let people see that the tarnished exterior doesn't hold a candle to the person I really am.
Oh, and that's another thing. I don't believe in the characteristic of cockiness. It's confidence. A person is not cocky, they are confident. They live their life as if they deserve everything they work for and as if they can do whatever they want to do in life. Happy reading...
I suppose I should start out with an introduction of sorts. I'm Molly, I'm a senior in college, and I may or my not have a disability. That's up to you to decide as you read along in my future posts. Okay, yeah, I have Spastic Diplegic Cerebral Palsy, or CP. I was diagnosed when I was a year old, and haven't had a day off since. That's a lot of days, you can do the math if you really care. The reason I pose it to you as a question, if there is anyone even reading this, is because it would be almost impossible to realize if you didn't know me or see e walking past you down the street. At the risk of sounding confident, I am a very bright person. I get around almost entirely on my own, I take classes, live at school during the year...you get the point. I may have Cerebral Palsy, but I try my damnedest to let people see that the tarnished exterior doesn't hold a candle to the person I really am.
Oh, and that's another thing. I don't believe in the characteristic of cockiness. It's confidence. A person is not cocky, they are confident. They live their life as if they deserve everything they work for and as if they can do whatever they want to do in life. Happy reading...
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