The Words of My Childhood

A few weeks ago, my mom brought by two boxes of childhood memories that I knew I couldn’t part with, though initially I didn’t even remember what was in the boxes. As I took a nostalgic trip down memory lane one evening, I found diaries starting from when I was really young, stuffed animals I could never part with, and best of all, stories and poems penned by yours truly. Interestingly enough, as I poured through everything I had written (at least those of which I kept), I noticed some distinctions within the words.

Within writing, there is the concept of “finding one’s voice” as a writer. I used to believe I was still searching for mine, not knowing when it would be fully developed or when I’d know I had one worth remembering. However, the authenticity of my “voice” as a writer, especially once I was high school, brought tears to my eyes. For instance, I was looking through Academe, a literary publication my all-girls’ school published during my junior year of high school. I was mindlessly flipping through the pages, stopping at prose or poetry that caught my eye or pulled at my heart. I read a poem called “The Barn,” devouring it, literally hanging on every word, and wondering the whole time who had written the poem. It wasn’t until I reached the bottom of the page…that I realized the author was me.

“The Barn”

I am a lost soul

On the search of self discovery

Looking in every nook

Every cozy log cabin

Finally stumbling upon

An old abandoned barn

 

Its windows are shattered

Showing the whole inside

Much like a heart

Left for the world to tear apart

It is overflowing with hay bales

Resembling each happiness

Each piece of simplicity in life

But leaving gaps

Just big enough for grey skies to surface

 

There are camping lamps in each corner

Shining light upon this life

And guiding the way

But sometimes burning out

To force me to find my way

In complete darkness

Dead silence

And hazy fog.

© Trailblazing 2018. Unauthorized use and/or duplication of this material from TrailblazingWithCP is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Trailblazing with appropriate and specific link to the original content.

As you can likely deduce from this poem, I’m definitely an “old soul.” I wrote “The Barn” 9 years ago, at the age of 16. By that point, due to all the physical and metaphorical obstacles I had to traverse as a result of my disability, I felt like I had enough life experience to last decades. What I didn’t realize until I read this poem as a 25-year old adult is that I have always had a “voice” as a writer. Over the years, I have refined it, strengthened it, and molded it into the essence of who I am today. Even as a child, the foundation of my voice was there, sitting in the dark, patiently waiting on my words to bring it to life. Maybe I never had to “find” it after all. Maybe it was there all along, waiting for me to be ready to come looking for the piece of myself that would allow all the others to fall into place.

 

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The Reality of PTSD as a Result of My Disability

*This post was originally posted on my first blog. I felt like it was applicable to the fear and anxiety I still have related to my past. I’m working through it of course, but change doesn’t happen overnight. It’s just one day at a time.

For as long as I can remember, I’ve always been a nervous person. Along with those nerves, I was also very scared, especially as a kid. Rather than using the word “fears,” I was simply told by my parents and my doctors that I had a “vivid imagination.”

Because of this vivid imagination, I remember one specific time when I was 12 and my parents waited a while before they told me about a specific scheduled surgery. I understand now that they didn’t want to alert me to it too far in advance because they knew I’d essentially be a nervous wreck right up until I had to go in for surgery. Though I can understand this now and I know it was a protective measure, I didn’t see it that way when it happened. I remember the night my parents sat me down to tell me about a surgery that would be occurring in about a month. I couldn’t exactly comprehend at first that my parents had waited to tell me, but once I did I immediately started to worry. Not long after that moment, the dreams I would always have leading up to a big operation started. The most common, of course, was the dream in which I woke up during surgery.

Due to my “vivid imagination,” my dreams were exceptionally vivid. In my dream, I was lying on the operating table. My eyes were open, and I was seeing everything. The doctors had the femur of my left leg in their hands, and they were twisting it to the left in order to straighten it out. Though I couldn’t feel any pain in the dream, I could imagine it, which was almost as bad. I looked at the doctor’s gloves, which were covered in blood, my blood. In a room as white as the operating room, the red seemed out of place. And yet, there it was. On the doctor’s hands was the blood that ran through my very veins. As I watched the doctors attempt to “fix” what was “not normal,” I tried to scream out. My mouth opened to make any kind of sound, but nothing happened. I tried to move. I focused so hard on trying to simply raise my right hand off the table, but it was too heavy. The doctors had to know I was awake. If they knew, they’d stop. If they knew, it would all be over. I just needed to do something to get their attention, but they were so focused on my legs. They didn’t even glance up towards my face, not even once, to see the fear and the anguish that was mirrored in my eyes. I wanted nothing more than to get as far away from that room as possible. I wanted to get away from the dead quiet that enveloped me like a blanket that was too heavy, practically suffocating me. The moment I closed my eyes to escape the horror I was seeing, I woke up.

When I woke up from this dream, I felt like I could barely breathe. Without even giving it a second thought, I yanked back the covers to look at my legs. I touched them to make sure they were still intact, still closed up tight. I looked on my legs, my hands, and my sheets for the blood. The blood that had been so incredibly red, so out of place in that white room. With my sweaty palms resting on my knees, my emotions took over. I cried out, knowing that tears couldn’t do this type of fear justice. I rocked back and forth, holding the stuffed teddy bear that was tucked into the bed beside me, and knowing as I started to shake that the tears were coming. When my body finally allowed me to cry, I curled up on my side, hugging the stuffed teddy bear to my chest like a shield, and let my tears speak for me. After the immediate emotion passed and I was curled up into the tightest ball I could form, I began to hum. I hummed the lullaby that my dad so often sung to me when he’d rock me in his mother’s rocking chair on the nights I couldn’t sleep. Eventually, sleep tugged at me again, and I opened my eyes for a pleading moment as I looked into the darkness, knowing the dream was waiting for me.

Physical Therapy: Past and Present

I received physical therapy every week of my life until I was 16 years old. So, me and PT have quite a history. And to be honest, it isn’t all that pretty. For me, PT was focused on getting me as independent as possible and as mobile as I could possibly be. That meant learning to walk with a walker, then crutches, and eventually independently. With a physical disability, that’s no easy feat. I didn’t walk in any sense until I was 5 or 6, I think…so I was way behind my peers in that respect. However, that’s where PT came in…to provide me with the tools I needed to reach the same level of functioning as my able-bodied peers. As you can imagine, it was hard work, it was painful, and I left every therapy session having cried at least once (or at least that’s how it felt).

The trauma of physical therapy didn’t surface until I had my first surgery at the age of 11. Following my first surgery, after being in long-leg casts for 8 weeks, physical therapists were ready to get my legs moving. Try keeping your legs board-straight for 8 weeks and then being asked to bend your knees. It’s a level of pain I wouldn’t wish on my worst enemy. One of the three most vivid memories I have is one particular day in physical therapy at Shriner’s Hospital for Children in Greenville, SC, following my first surgery. The physical therapist was determined to get my knees to bend. However, up until this point I had fought her every step of the way. She ended up placing a blue-padded bench right behind my knees in the hopes that gravity would do it’s job over the course of an hour and by the end of therapy, my knees would be bent over the bench. Suffice it to say, gravity didn’t win. I held my legs in the air for 90% of my PT session that day. Eventually, the physical therapist put her hands on my knees and pushed down. Because I had held my legs up for almost an hour, down they went and out came my screams. One minute my legs were in the air, pain-free, and the next…my body went into overdrive trying to process the pain that was splitting me open from inside. I cried and screamed so loud and for so long that I remember a nurse coming in asking if everything was okay. Until that moment, I didn’t understand the concept of a blood-curdling scream…and I also didn’t understand what it meant to feel such an intense pain that when you open your mouth no sound comes out at all. Now I know better.

That PT moment occurred at the age of 11. I am now 25, and I can still go back to that moment in my mind in a matter of seconds….and when I do, the tears come, and I can’t stop. I cry for the pain I felt, the level of fear and anxiety that was coursing through me, and the fact that at the age of 25, I can so easily place myself back in that moment without even blinking. To put it bluntly, physical therapy has essentially traumatized me. It still holds a lot of power over me, I still have nightmares, and I still have really intense reactions towards PT.

A few years ago, my doctor suggested I go back to PT again. “It won’t be like last time. This time, when you say stop, they will.” See, as a child in PT, my voice didn’t matter that much. If I said stop, the pain continued. The physical therapists kept pushing. They had to in order to help me get to the point I needed to be. Therefore, a few years ago, when my doctor said it would be different, I didn’t believe him. Even when the physical therapist said, “You’re an adult. You’re in control now,” I had a very hard time believing her. After only one PT session as an adult, I started having panic attacks. Even though I was in a different place, in my mind I was an 11-year-old girl in the PT room of Shriner’s Hospital. I panicked. I couldn’t breathe, and I felt like I was dying. In short, I had a panic attack.

I have not been back to physical therapy since my previous experience as an adult caused panic attacks. However, I’ve reached a point in my life where I feel like I at least need to try going back. I am utterly terrified and just the thought of it makes my heart race and my breath become rapid. How I’m going to go through with it, I seriously don’t know. But I have to try. I owe myself that much. And I just hope the physical therapist doesn’t negatively respond to my panic attack. I can’t have that happening again.

Send good thoughts over the next few weeks. I need them.

The Road to Acceptance

In the world of disability, there is a term known as “acceptance,” as in….acceptance of your disability and all that it means for you. I’m going to be honest. I’m 25, and I’ve had Cerebral Palsy since birth, but there are still plenty of days where I get just plain frustrated with my CP. Typically, most of my frustrations are aimed at the outside world and the lack of understanding of disabilities (physical and mental) in general. Yes, there are a lot of positive changes for the disability community, like the Americans with Disabilities Act and the Individuals with Disabilities Education Act. However, there is much more work to be done, and we can’t stop here. No matter how positive your outlook, 100% overcoming societal stigma experienced by being a member of the largest minority in the world is close to impossible (at least in my opinion), and for me, that is the hardest thing about being disabled. Living my day-to-day life with CP is a walk in the park compared to societal stigmas and societal responses to having a disability. I don’t know how many times I’ve gotten pissed because someone has parked in a handicapped spot without a handicapped placard or someone has parked in the access lane next to a handicapped spot and/or parked in front of an access ramp because they are “just waiting on someone and they’ll only be a few minutes.” Because, news flash, those spots and accommodations are there for those that need them. Just be respectful and realize that.

It’s safe to say I haven’t reached the point where I’ve fully accepted my disability. However, I’m doing much, much better with it now than even just a few years ago. I’ve gotten more comfortable expressing my needs and asking for help when I need it. I’ve started to better understand the reality of getting older with my disability as opposed to still thinking I can do the things I did even 5 years ago. I’ve settled in, in a sense. For some, that may look like giving up. But trust me, I’m far from it. I’m way too much of a fighter to stop trying to have the most fulfilling life possible. Trust me, those who know me know that “giving up” does not even exist in my vocabulary. Yes, being disabled is just a piece of who I am, but from my standpoint, it’s a pretty big piece simply due to how much it impacts me on a daily basis.

Best of all, I’ve reached a point where I actually want to utilize my experiences of living with CP to connect with and help others. That used to not be the case. I used to want to get as far away from my disability as I could. Simply put, I was in denial, and I was in a space where I just felt like I couldn’t process all the emotions that come with living with a disability. Day by day, I’m processing through those emotions. And best of all, processing all those feelings is best done for me through writing. I have a feeling that’s partly because not only do I love to write, but I am hopeful that my words will connect with someone else, even if only in a small way.

So, have I fully accepted my disability? Likely not. And why do you ask? Because there is always, always more work to be done on ourselves and more thoughts, emotions, and situations to sift through. I’m content with that, though. As long as I’m processing through things and changing, I’m growing and ultimately becoming the person I’m meant to be. And for me, there’s nothing better.

What Blogging Means to Me as Someone with a Disability

Writing has always been a comfortable outlet for me. Maybe because I feel more true to myself when I write than when I try to vocalize my emotions or connect with people in-person. As a child, books and words meant safety. As a got older and experienced numerous surgeries related to my Cerebral Palsy, writing was once again the outlet I immediately went to because I felt like no one would understand the stream of consciousness going through my anxious, but inquisitive mind. I didn’t have my first surgery until I was 11, but I have this clear image in my mind of sitting on the brown couch in the den of my childhood home after my first surgery with a yellow legal pad on my lap and a pen in hand. I may have had both of my legs in bright blue casts with a yellow bar in the middle, making it difficult to move, but I didn’t let that stop me from doing the one activity that has always set my soul on fire.

Even then, I wrote stories about myself. The story of waking up in the ICU after surgery. The story of experiencing Christmas from inside the four walls of a hospital. The story of weekly visits from therapy dogs. The story of how bi-weekly arts and crafts were the only time where I forgot, if even for a minute, that I was in the hospital and about to undergo a surgery that eventually lead to nightmares, panic attacks, and sent my imagination into overdrive. But those stories weren’t just stories. They were my life. They were a chance to process through the fear, anxiety, and pain I was feeling without having to figure out how to speak my feelings out loud. They allowed me to revisit the experiences, while also being able to act as a spectator within my own life.

I think that’s why blogging has been so helpful for me over the years. It’s been an escape, while also being the place where I found my voice, became part of a community, connected with other people and families with disabilities, and found a place I belonged.

I’ve spoken about belonging before in the sense of being someone with a disability. To put it bluntly, it’s hard. The world is not made with disabled people in mind. Besides the topic of physical access, there are also areas of education, housing, employment, and access to healthcare. Each of those areas are much, much different experiences for someone with a disability than they are for an able-bodied person. In regards to education, I had to be sure the schools, colleges, and graduate schools I attended were accessible to me. For me, that meant small schools (since walking long distances was hard), limited walking distances between classes, and in the case of college, finding a school with a substantial disabled student population (so I could be sure they had resources I might need). For housing, it meant finding an apartment complex willing to install grab bars in the bathroom so I can easily get in and out of the shower. Employment-wise, it might finding a company to work for that was comfortable with and supportive of my disability.

Often times I feel like I spend so much energy figuring out to live in a world not made with me in mind that there’s no energy left to reflect on the positive things my disability has given me. For instance, I don’t know if I would have become a writer were it not for my disability. Growing up, I wanted to find something to do that I could enjoy that my disability wouldn’t hold me back from. For me, the answer was writing. Short stories, fiction, poetry, song lyrics….and eventually blogging about my life. It’s a place I’ve always known I’ve belonged…the writing community, that is. The blogging community. Right here, with all of you.

So, thank you. Thank you for giving me a home in this crazy, frustrating, but beautiful world we live in. Thank you for encouraging me to come back to blogging. Thank you for the comfort, support, and love. But most of all, thank you for reading. My number one goal as a writer has always been to relate to just one person or have one person’s perspective changed as a result of my words. That, to me, is the ultimate dream. And you wonderful readers have given that to me time and time again. It’s because of you that I keep writing. And because for me, writing is and always will be my oxygen, my passion, and the one place I feel at home.

My Writing Is Getting A Facelift!

 

I’m typically not one for New Year’s resolutions. My stance has always been that if you want to change something in your life, you don’t need to wait for a specific day of the year to make those decisions. However, at the same time, I get it. It’s a new year. A chance to try new things, commit to things you’ve strayed from, or just make a commitment to treat yourself and the people you love better.

On November 1, 2011, I started my very first blog: Life In The Blue Ridges, and to put it simply, it was not only a smashing success, but one of the happiest times in my life. Back in 2011, I made the commitment to blog every single day for entire year, and I did it. It wasn’t always pretty. Sometimes I had something to say, other days I didn’t. Yet, I still posted every day. Even on the days when the words just wouldn’t come, I reflected. I posted the song lyrics to music that had been stuck in my head, I posted recent photographs I’d taken, or I talked about the book I was currently reading. Through a year of daily blogging, I found something I didn’t know I was searching for: my voice and a community. Simply put, I found myself.

A lot has happened since I first began blogging a little over 6 years ago. I met the love of my life, I graduated from college (BA in Psychology), I got my Master’s in Social Work, and I’ve traversed the daily grind of living life with a physical disability. A lot has changed since I first began blogging, but one thing has stayed the same: my love of writing. However, I’ll be the first to tell you that my blog in it’s current state does not reflect my love of writing. Life happened. School was placed at the forefront of my life. I fell in love. My career was my priority.

As previously stated, the happiest time in my life was when I was blogging daily. I’ve come to that conclusion. And I’ve also realized that the joy of writing can only be felt by writing itself. I’ve tried getting myself wrapped up in my job, reading a lot of really good books, and just doing things that make me happy. However, none of those things have brought me close to the bliss and authenticity I feel when writing. So here I am….back in the blogging community…and making the resolution to myself to write every single day once again. How long that will go, I’m not sure. As of now, I want to set the goal of writing every day for a year. I did it once. I can do it again. I’m sure things will come up that may derail that a bit, but when that happens, I’ll come back to the blank page and type one word in front of the other. That’s all writing is anyway, right?

Happy writing, friends. Here’s to a new year, resolutions, and lots and lots of writing.

Learning to Drive With a Disability

As I was entering my teenage years, my parents and I were unsure whether I’d be able to drive a car. However, as with most things in my life, I knew I wanted to drive a car, and I was going to do anything I possibly could to make that happen.

While I didn’t drive a car until I obtained my permit, I was driving as early as 5 years old. I used to drive my Barbie Jeep around and around my neighborhood for hours on end. I’d turn on the little Barbie radio in the Jeep and “floor it,” flying down the sidewalk in my hot pink Barbie Jeep. As I got older, my Barbie Jeep transitioned to a go-cart and eventually a four-wheeler, but the go-carts we had were always my favorite. I know I likely drove way too fast, but I remember my neighborhood used to say that they always knew when I had my go-cart out because they’d hear my laughter and screams all the way down the block. Therefore, when I eventually got behind the wheel of a car, I had years of driving practice already. It’d be a piece of cake, right? Not quite.

I have spastic diplegia cerebral palsy, meaning my CP primarily impacts my legs and causes them to be incredibly stiff. Due to the stiffness of my legs and because I knew that my legs had a tendency to involuntarily shake if my foot was placed in a particular position (called clonus), I was pretty nervous about learning to drive a car. I didn’t know if I’d be able to move my foot from the gas to the brake quickly or easily enough. I also didn’t know whether my legs would become tired quicker due to having to be flexed when using the gas pedal and brake pedal. I had been told by my physical therapist at the time that there was always the option to utilize hand controls to control the gas and the brake as opposed to using my legs. However, I also knew that I wanted to do my best to drive just like everyone else.

A benefit I had when learning to drive was the fact that I lived in a small town. Because of that, I practiced driving on dirt roads, empty back roads that hardly had any traffic, and through town where the speed limit was only 25 miles per hour. Typical kids learning to drive might have been frustrated by this, but I was not. I wanted to become as comfortable driving on country back roads as I could. In order to test my response time, we’d be driving around and my mom would say “deer” (proof that we lived in the south), and I’d pretend I saw a deer in order to practice slamming on the brakes. We learned pretty quickly that I had no problem moving my right foot back and forth between the brake and the gas (which was a major relief on my part because I didn’t want to have to utilize hand controls).

The most important thing for me when learning to drive was taking it slow. Initially, due to my own fears, I drove really, really, really slow, but that changed as I became more comfortable. Once I got my permit, took driver’s ed, and accrued a certain number of driving hours, I was ready to take the driving aspect of the test to obtain my license. And despite all the practice I had, I was completely terrified.

When I took the driving test with a woman from the DMV in the passenger’s seat, initially everything was fine. However, within a few minutes my legs started shaking so badly that it was difficult to keep my foot steadily on the gas. The DMV woman noticed the shaking and said, “Why are you shaking like that?” I responded, “I shake when I’m nervous,” not wanting to bring up my disability for fear of her using that against me when determining if I passed or failed the test. Upon hearing my response, she asked me to pull over so I could “compose myself,” though I knew that no amount of sitting still would prevent my legs from shaking. Eventually, the shaking lessened to the point where I got back on the road and completed the test. Once we returned to the DMV, the woman’s response wasn’t what I was expecting. She said, “You almost didn’t pass,” as opposed to, “Congratulations.” Looking back on it now, I still feel like she was just overall skeptical about my ability to drive a car.

Because of my disability, learning to drive wasn’t just about getting my license and having a car to drive. It was so much more than that. It meant independence. It meant feeling included as a functional member of society. But more than anything, it opened so many doors in my future. There have been a few instances where people have been surprised to learn I am able to drive on my own, and I know in the disability world it is no easy feat. But I also know that if I had been unable to drive, I would have found some other way to take on an active role in my world. After all, my life has always been one of adaptation, but it has never been one of defeat.