Tag Archives: Special Needs

Where lifeintheblueridges has been, and what’s next!

6 May

It’s been quite a while since I’ve written a blog post, and that’s mostly because I have been focusing solely on my final year of college. As of last Thursday, I completed my last final exam of my undergraduate career. I’ll be graduating in just 4 days with a Bachelor of Arts in Psychology. I truly can’t wait to have that diploma in my hand and have my family and friends around me to celebrate!

Go confidently in the direction of your dreams. Live the life you have imagined.-Henry David Thoreau

What’s next in my life: Graduate school! Starting in August, I will attend UNC Charlotte’s MSW (Master’s of Social Work) program, and I truly can’t wait! One of my dreams of helping others is finally going to be coming true, and I am so ready for the journey ahead. Though it will be sad to close the UNC Asheville chapter of my life, I am anxious to start the next phase of my life in a new city which holds new opportunities and the chance to bring more wonderful people into my life. What could be more wonderful than that, you ask? Well…finally getting to focus solely on what I love and long to do for the rest of my life: helping others (hopefully the special needs population).

Don’t ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive.-Howard Thurman

Where lifeintheblueridges has been: Since its creation in November 2011, this blog has been an incredible gift to me in so many ways. Within the first few months of starting my blog, I connected with many people like me, aspiring writers. More than that, though, I was welcomed with open arms into a community I never knew I needed. Because of constant support and encouragement from those who knew me not personally, but simply through my writing, I finally reached a point in which I was able to start something I never thought I’d be able to do: the sharing of my story of living with Cerebral Palsy. In January of 2012, I began receiving positive feedback from fellow bloggers and connecting with others who either have Cerebral Palsy or another disability or know someone who does. Because of all the positive feedback, in January of 2012, I started writing my memoir of living with Cerebral Palsy. If it hadn’t been for the encouragement from the blogging community and other friends, I don’t know if I would have ever had the courage to open up about my experiences of living with CP. Since opening up, however, I have connected with so many people who’ve told me to keep on sharing. More recently, I’ve also been giving talks to elementary and middle schools in Buncombe County regarding my experiences of living with CP, and more specifically, the bullying experiences I had as a child as a result of my Cerebral Palsy. I am incredibly grateful for the opportunities I’ve received to talk with so many kids about disabilities and bullying, especially because they have allowed the kids to learn more about what it’s like to live with a physical disability and it’s given them the opportunity to ask any questions they want about me and my disability (which I fully support since I know there are so many kids who are curious). Overall, through this blog, I have gained the courage to open up about my experiences and have developed the desire to share my story with others. However, I’ve also gained encouragers, supporters, fellow writers, beta readers fellow CPers, special needs parents…or more precisely, a community of people that is cheering me on currently and will continue to do so even after my memoir is eventually published (or that’s what I hope, anyway).

Where lifeintheblueridges is going: Beginning this July, I will no longer live in Asheville…no longer will I be nestled among these mountains I love. Therefore, the beloved lifeintheblueridges will be ending after this post. In the coming months, I’ll no longer be a college girl in Asheville. I’ll be even more than that…a graduate student in Charlotte! Therefore, though this blog has provided me with more than I ever thought possible…I’ll be creating a new blog, especially because I am about to close one door and open another. I am incredibly excited to begin a new blog journey, a blog that will solely focus on writing about my experiences of living with CP. Since this blog helped me to open up about my experiences, there’s NO WAY I’m going to stop sharing my story and writing my memoir. I hope to be sharing my story and the writing process of my memoir even more on my new blog!

*As of right now, I am not sure when my new blog will be up and running, but I will make one more post on here once the new blog is live so that everyone can continue following me and my story.*

Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

I’ve returned, and here’s why!

16 Apr

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After over 2 months, I’m back. However, before I go into why I’ve returned, I thought I’d fill you in on what’s been going on in my life recently.

During the months of January, February, and March, things were rough for me physically. I was in more pain than normal, I was falling more than usual, and it was incredibly frightening. I felt like I had slipped back in time. Despite my initial resistance, I contacted a local doctor in Asheville who deals with CP in adults (which, in some ways, seems like some kind of Mecca). However, I was afraid, understandably. I didn’t know if I wanted to hear what the doctor would have to tell me regarding my disability. I didn’t know if he’d mention surgery or botox. I just knew that I wanted answers, but I was scared to know what they truly were.

Due to my anxiety connected with going to this new doctor, I had my parents come with me as moral support, and I knew they’d want to hear what the doctor had to say anyway. What was the verdict, you ask? Baclofin (an anti-spasticity medication to hopefully lessen the increased spasticity) plus regular physical therapy and pool therapy for a period of 6 weeks. Even though I was happy about the Baclofin since I had never taken an anti-spasticity medication and was interested in how it would affect me, I was much less excited about the physical therapy. I remember leaving the doctor’s office that day in a weird haze. Once I got outside, I started to cry. Physical therapy? Again? Wasn’t 15 years enough? I couldn’t even seem to wrap my head around it. I was scared and for good reason. I had more than a lifetime of memories from physical therapy to write multiple books on the subject, and I wasn’t looking forward to returning…at all. However, after talking it through with my parents and numerous friends, I realized that this was ultimately my decision. If I tried the physical therapy again, and I wasn’t getting anything out of it, I could stop…just like that. With that understanding, I made the decision to go ahead with the physical therapy and the pool therapy. After all, I was in a crazy amount of pain. If there was any chance that physical therapy could help, why not give it a try?

My PT evaluation (before I even started back with PT exercises) felt like stepping back in time. I felt like a kid, walking into a place I knew would result in me being in tears in an hour. My anxiety was sky high, and I was terrified. For my entire life, physical therapy was associated with one feeling: pain. I didn’t understand why I had decided to place myself in that environment again…and willingly at that. The fear came back full force when the physical therapist asked me to bend one of my knees back as far as I could. I have always been incredibly hesitant to bend my knees due to a painful experience during my intense physical therapy following one of my major operations. Therefore, the slight mention that the physical therapist may be planning to “try to get those knees to bend” had me terrified. Though when I left that day, the physical therapist assured me that I was in control and they weren’t there to hurt me, I just looked at her. Up until that point, I had never really had the say-so regarding my physical therapy, mainly because my previous experiences with PT occured when I was still a child and the primary goal was to get me up and moving so that I could be as independent as possible.

As the weeks went on, so did the physical therapy and the pool therapy. I also continued to take the Baclofin. I started to like the pool therapy, simply because it was a less intense version of physical therapy. Therefore, I felt like I could actually relax. The first regular PT session following the first evaluation wasn’t enjoyable like the pool therapy though. The exercises I was asked to do gave me flashbacks to previous physical therapy sessions in my past, and it was incredibly overwhelming. At one point. I even started to have an anxiety attack. I couldn’t seem to get the feeling of pain out of my head, though I wasn’t in pain during the present moment. It just felt close. The rest of the day following the PT session in which I had the panic attack was rough. I cried off an on throughout the day, and painful memories from my past PT didn’t seem to want to leave me alone. Though I was incredibly anxious to return to PT following that rough day, I did. I explained how the previous PT session deeply affected me and caused me to be really upset. Thankfully, the physical therapist responded well to my anxiety and told me that she’d find other stretches I could do that wouldn’t cause me so much emotional stress.

Last week, the 6 weeks of physical therapy and pool therapy came to end. Though I was glad that the physical therapy had provided me with some exercises to implement into my current workout, I was happy to be done. I was happy to actually get discharged from physical therapy. I’m also still continuing to take the Baclofin, the anti-spasticity medication. Though I haven’t seen immediate changes, I have noticed that I haven’t fallen in a number of weeks, which is huge since I was falling multiple times a week prior to starting the PT, pool therapy, and Baclofin. So that’s where I am as of now, taking it one day at a time.

However, the main reason I’m back doesn’t have to do with physical therapy or being in pain. I’m back because a week ago I received news that the post I wrote last May for Holstee is going to be included IN A BOOK. Though I’ve been published numerous times before (online and in newspapers), there is something so incredibly about the idea of being published IN A BOOK. The My Life Book is still in its early stages, so I don’t have any information about when the book will be published, but I will definitely keep all of you posted. The interesting part is that when I was informed that my story would be included in the book, the suggestion to edit the article since it has been almost a year since it was published was thrown onto the table. I’m somewhat torn, however. A lot has definitely happened in the last year, and since the article I wrote for Holstee involves talking about how I’m writing my memoir of living with CP, it would make sense to include the struggles I’ve been dealing with most recently. However, I also know that it could be hard to limit all of the explanation to just one article. Decisions, decisions. Either way, things are looking up!

Now, what’s being going on with all of YOU? Two months doesn’t seem like too long, but it’s felt like an eternity. Either way, I am so happy to be back!

Why Jodi Picoult Deserves Praise From The Special Needs Community.

9 Feb

One of my favorite authors is Jodi Picoult. I’ve read all of her novels, and I saw her speak in March of 2010 regarding the release of House Rules (and it was by far one of the best nights of my life so far). However, I love Jodi Picoult for more reasons than she’s a great author (I quote her books more than any other author), every one of her books has taught me something, and the fact that she addresses touchy subjects. I also love her because she responds to emails from her fans. She’s said in numerous interviews that she’s the one responding, rather than one of her assistants.

In Jodi’s 2009 novel, Handle With Care, the main character, Willow O’Keefe, has OI, or osteogenesis imperfecta (a genetic disorder characterized by brittle bones that break easily). Even though Jodi discussed a disability that is very different from Cerebral Palsy, I still felt like I was able to relate to much of what Jodi discussed in Handle With Care about what it means to be different and what it’s like to feel so much physical pain on a daily basis. It was a special moment when I realized that my all-time favorite author was writing about certain feelings that I have experienced on a daily basis: the desire to find a place I belong in a society that’s not fully accepting to those who are “different.”

In March of 2009, I wrote the following email to Jodi:

Dear Jodi,

I just recently read the synopsis of your new book, Handle With Care,
and I am very excited to begin it! However, as I was reading your
conversation about Handle with Care that is featured our your website,
something caught my eye. Even though I don’t have OI, I have another
disability, Cerebral Palsy, which has affected my life since I was
young. Personally, I just want to let you know how deeply you touch my
heart with each of your books. You do a wonderful job of portraying
how it truly is for those of us who are different. I can sympathize with the kids you
interviewed that have OI. Even though it may be extremely
rough for them, they are just like any normal kid, and nothing warms
their heart more than when they are actually treated like one.
I am extremely thankful if you actually took the time to read this.
You and your books have made a significant impact on my life. I hope
to one day meet you and let you know face to face how much you have
truly helped me.
Thanks again,
-Amelia

This was her response:

Amelia, kids like you are MY heroes.  I hope you like the book and hope it rings true!
Jodi Picoult

So far, Jodi has discussed disabilities such as OI and Asperger’s (House Rules), and I applaud her for interviewing kids who are faced with the disabilities she has covered because those of us who have lived through the experiences our disability presents are the only people who know what it’s really like. Therefore, Jodi Picoult deserves a crazy about of praise and support from the special needs community for giving a voice to the issues that may have not had much prior awareness or increasing the level of awareness to a more diverse population. Though I still silently hope that one day Jodi will write a novel that has a character with Cerebral Palsy in it, I already have gained so much from the fact that she has written about many of the emotions I feel on a daily basis in regards to my disability.

Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

Happy (almost) first birthday, lifeintheblueridges!

31 Oct

Even though today isn’t the “official” one-year birthday of lifeintheblueridges, I will be starting NaNoWriMo tomorrow. Therefore, my post tomorrow will be my writing piece for day one of NaNoWriMo rather than a “Yay lifeintheblueridges is one year old today” post. However, I knew that I couldn’t go full tilt into my first NaNoWriMo experience without celebrating the one-year birthday of this blog.

As well as November 1st being the one-year birthday this blog (in which I have written one blog post every day for an entire year), it is also the celebration of the beginning of my journey to find myself. Yes, that may sound cliché, but it’s true. Since I started my blog, I have become a completely different person. When I first began, I had no idea that my words would act as a gateway into what I strive to do in life: advocate for people with disabilities. I first began acting as an advocate in January of this year when I made the decision to share my own story of living with Cerebral Palsy. Though it was a very spur of the moment decision that was made one evening as I sat in bed thinking back on my life in and out of hospitals and how hard it was not having someone who understood my pain and fear, I knew that it was a decision that would stick. I could feel it.

I am proud to say that 10 months later, the decision has remained strong. More than anything, it has grown. Though I know that part of the growth has to do with the inner strength that I have rediscovered within myself, I also know that it has a lot to do with the support and encouragement that I have received from the blogging community. Before beginning my blog a year ago, I never knew that the blogging community was as close to a home with a strong sense of belonging that I’d ever hope to find. Even though I am sure that there will be other places along the way that will allow me to feel a similar sense of belonging, I know it started here. I have no doubt that as I continue to share my story, I will continue to become more confident in myself. However, I also will be sure to not forget those who helped me first begin to recognize my true self: my parents, my friends, my mentors, and all of you lovely blog followers.

It’s always so crazy to think of how much can happen in a year. When I began this blog one year ago, I didn’t know that this is where it would lead. I didn’t know that I would reach a point where it didn’t scare the hell out of me to talk about my life with Cerebral Palsy. I didn’t know I’d be able to talk about certain memories without crying because I could remember the pain so vividly. Honestly, I didn’t think I’d be able to revisit any of the painful memories at all. For so long, they were stored away. I kept them in the dark recesses of my mind, and I never even considered the possibility of bringing them out into the light. The simple thought of reliving the moments in my life that were filled with so much pain and fear was unimaginable. However, I think all of that began to change when I realized that I had the power to help other kids with disabilities feel less alone by sharing my own story. Truthfully, all of it changed because of Grace.

Grace. The twelve-year-old girl who I know who has Cerebral Palsy. The girl who is facing what I’ve faced, and yet always seems to have the biggest smile on her face. The girl who looks up to me as if I have hung the moon and the stars. And yet, she’s also the girl who has the ability to break my heart since, at the time, I knew I’d never be able to save her from the pain. There was nothing I could do that would result in Grace not having to feel the emotional and physical pain that I have had to face my entire life. However, eventually, I thought of a way I could help Grace. Though it may not be in the way that I wished, I know that I can help Grace (and many others like her) by sharing my own story and bringing to light the pain, fear, loneliness and rejection that I have faced throughout my life. Grace. The girl who I feel like I can completely relate to since we know each other’s pain. The girl who often sends me spiraling back into painful memories that have been long gone and over for many years by simply being present in my life. And yet, I long to help her see that she is not alone, that she is strong, and that she is loved. I long to help her see that she is one of the reasons why I’m writing my memoir. Maybe even the sole reason.

A conversation with my younger self.

21 Oct

Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self, the little girl with the nervous smile who has yet to go through 3 intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain that she would experience in her future. I wonder…

I’m sitting on a bench in a small park that I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask. She looks up at me with the hugest grin on her face.

“Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said.

“Wait, how did you know my name?”

“Because I’m you. I’m you at 20 years old. We are the same person.”

The younger Amelia looks at me quizzically for a second, and then asks, “Does this mean that we can be friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something that I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends that will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” the younger me asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend that you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self as she looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something that anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially on the days when the pain gets really bad, but I promise you’ll get through it.”

The younger me then looks down at the braces that are on her feet and touches the plastic ever so lightly with her fingertips.

“I’m scared,” she whispers softly.

“I know,” I say. “It’s okay to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

The younger me looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see the younger me roll her eyes at me, I know that my words are impacting her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love for the little girl who has yet to know the intense pain that she will face. I have to look away from her before she realizes that I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” the younger me says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that the younger me doesn’t grasp the magnitude of this moment. If only she knew that I would save her from all of this pain if I were able to. However, deep down, I know that I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know that I need to remember to be her as well. I know that little girl is still within me, and she is showing me just as much love as I wanted to be sure and show her.