The Words of My Childhood

Amelia Hall # # # # # # # # # # # # # # # # # # # # # # #

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.

 

Categories: Disability, Uncategorized4 Comments

The Reality of PTSD as a Result of My Disability

Amelia Hall # # # # # # # # # # # # # # # # # #

*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.

Categories: Cerebral Palsy, Disability, Uncategorized, Writing1 Comment

Physical Therapy: Past and Present

Amelia Hall # # # # # # # # # # # # # # # # # # # # # #

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.

Categories: Cerebral Palsy, Disability, Uncategorized, Writing11 Comments

The Road to Acceptance

Amelia Hall # # # # # # # # # # # # # # # #

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.

Categories: Cerebral Palsy, Disability, Uncategorized2 Comments

Wedding Planning with a Disability

Amelia Hall # # # # # # # # # # # # # # # # # # # # # # # # #

Winter is my least favorite season. Though I love snow, cold weather is really hard on me as someone with CP. I’m naturally very stiff as it is because of my disability, and cold weather makes it 5,000 times worse as my muscles tense up the moment cold weather arrives. Even when I put a ton of layers on, it still seems to happen. The coldest of air cuts straight through to my muscles I guess.

Despite hating cold weather, I’m excited for this month this year. This month will mark 4 years since my now-fiance and I have been together. The 8th of this month will mark 8 months until we get married. And during the last weekend of the month, I’ll be heading to Chicago with my mom to go wedding dress shopping with my best friend. It may seem strange that I’m going all the way to Chicago to shop for a wedding dress, but not to me. I knew within of year of being friends with my best friend that it’d be a friendship to last a lifetime. I was the maid of honor in her wedding. She’ll be the matron of honor in my wedding. And the thought of trying on wedding dresses without my best friend by my side is unimaginable.

Strangely enough, I’m a bit nervous about going shopping for a wedding dress, though I’m definitely excited too. I’ve never been a fan of dresses, but I’m determined to find a wedding dress I love. The hard part will be finding something that not only works with my body but is something I can easily move in and feel comfortable in. Because of my CP, I have quite a sway in my back that I’m really self-conscious about, so that has me leaning towards a “ball gown” type look because I don’t want something that will accentuate the curvature of my back. At the same time, I don’t want something super heavy because walking in normal clothes is difficult enough. Adding in tons of fabric and lots of length for the pretty look may be against me. I doubt it’ll be easy to find a “ball gown” type dress that is lightweight, but we’ll see. As much as I want to find a dress I love, realistically I need to find something I can easily move in and that I’ll be the least likely to trip in. I fall very easily and often without warning, and just the thought of falling in my wedding dress on my big day is incredibly anxiety-producing. I know it’s not something I should worry about, but because of my disability, I can’t help it. I have to look at dresses realistically. Can I move in this? Is it too heavy? Am I going to fall over it over and over again. Though the natural thought would be…”oh, why don’t you just hem it so you won’t fall?” And yes, that’s as no-brainer. But here’s the thing, I fall even if there isn’t anything to fall over. And doing that in front of all the family and friends I love would seriously suck.

Wedding planning has been interesting as someone with a disability. For venue options, I had to take into consideration accessibility and whether I’d be able to easily get around. I ended up choosing a venue with a lot of flat, open space (despite it being in the NC mountains)! As I’ve stated above, I’ll have to consider it when finding a wedding dress. I’ll also need to be particular about the shoes I choose. I can’t walk in heels. However, I can walk in cowboy boots, and since my wedding will be on a ranch / farm, it’s pretty much a done deal. 🙂 Thankfully, I have a great pair of cowboy boots I bought with my mom when we went to Nashville a few years ago. I’ll just have to find a dress that ALSO works with my boots (and all the other requirements). Easy, right?

It may seem strange to realize just how much I’ve had to take into account while planning my wedding as a result of my CP. Sometimes, it gets me down. However, it’s my life. I’ve had to adapt ever since I was a child. It’s nothing new. Best of all, my fiancé and my bridesmaids and matron of honor are super supportive when it comes to all that. I’m sure they’ll be a big help with logistics on the big day. Plus, at the end of the day, I get to plan a wedding for exactly what I need, and no one else can say a thing. I don’t pull the disability card often, but if it means the difference between getting something I need vs. not having it, I’m going to pull out all the stops I can. It’s my wedding day, after all. 🙂

Categories: Cerebral Palsy, Disability, Uncategorized

What Blogging Means to Me as Someone with a Disability

Amelia Hall # # # # # # # # # # # # # # # # #

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.

Categories: Cerebral Palsy, Disability, Education8 Comments

Disability and Love: It’s Not Impossible

Amelia Hall # # # # # # # #

Though I’ve touched on this before, it bothers me that there’s a stigma of disabilities and love within society. Maybe not a stigma…but hesitation. It’s there. I’ve experienced it first hand, and I’ve observed many depictions in the media where a disabled person finds love and it become a news story….or my personal favorite…the article about two people with disabilities getting married. Hear me out, though. There is nothing wrong with two people with disabilities being together in an intimate relationship. If you find the one you love, and they have a disability too, but they also love you right back, then that’s wonderful. However, please don’t settle for a mediocre relationship just because you want to be with someone. And don’t think that just because you have a disability you won’t find love. I’m living proof that’s not the case. However, that also doesn’t mean that a disabled person in a relationship is newsworthy. It’s not. It’s every day life. Unless you’re a celebrity, are you going to have an article in the paper about your date to prom? No.

Was I overwhelmed by the dating process? Yes. Was I worried that someone might not want to be with me because of my disability? Also yes. But you know what? You don’t want to be with someone like that anyway. If someone’s put off by your disability, they aren’t right for you. Simple as that.

I by no means am a relationship expert in any capacity. I just have my own experience as a disabled person trying to find a companion for life. My fiancé does not have Cerebral Palsy like me. Truthfully, I had concerns about being with someone who also had CP simply because I knew the amount of help I’d need physically as I got older, and I wouldn’t want to put someone in a position where they didn’t feel comfortable doing that. Would I have considered it if the person I fell in love with also had CP? Maybe. I’ll never know.

What I do know is this: Find someone who cares. Find someone who loves you AND your disability, not just you (i.e. they don’t have to necessarily be thrilled about your disability, but if they have doubts about your ability to love or be in a relationship because of your disability, you deserve better). Find someone who you can talk to openly about disability logistics (and that right there is the cornerstone to my relationship). If my fiancé and I couldn’t talk openly about how my disability impacts our relationship, we wouldn’t work. Getting to that level of openness with a partner could take some time, but if you haven’t had a conversation about your disability and how it would work in the context of a relationship after a few months, maybe there’s a reason. It’s also possible that you may have no idea how your disability will impact / affect a relationship. That’s okay too. When I first started dating my fiancé, everything was uncharted territory regarding relationships. But we got through it together. We learned side by side. Sometimes we had no idea how to handle certain things. When we went on our first date, he didn’t know whether to help me or whether I’d take offense to that. *Hint, hint*: He asked me what he needed to do / how I wanted him to help me, and I told him. Sometimes I needed an arm to steady myself; sometimes I didn’t. Either way, I communicated my needs to him. Because news flash: someone doesn’t know you need help until you ask. And it’s okay to ask. If you ask, and they say no, run. That person’s a jerk. You’re better off without them.

Love is possible as a disabled person. The smartest love advice I was ever given was: “Stop looking. Love will find you when you’re doing the things you love.” However, I’ll amend that advice to say this: It’s highly likely you’ll find love when you stop relentlessly searching. However, don’t expect love to fall in your lap, either. I had to do my fair share of work in meeting my fiancé. For instance, I initiated conversation first. I approached him first. I knew enough to know I’d likely have to do that, which some may be frustrated by. And it’s certainly not required. I just knew I needed to be proactive, and I knew I didn’t want love to pass me by.

I was lucky. I have found a person to spend my life with who doesn’t view me as a burden. It’s possible for others with disabilities too. Trust me, I’m living proof.

Categories: Cerebral Palsy, Disability4 Comments

The Mobility Chronicles: CP Edition.

Amelia Hall # # # # # # # # # # # # # # # # # # #

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.

Categories: Cerebral Palsy, Disability10 Comments

My Writing Is Getting A Facelift!

Amelia Hall # # # # # # # # # # # # # # # #

 

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.

Categories: Disability, Education7 Comments

Dating With a Disability [Part 2]

Amelia Hall # # # # # # # #

The initial dating with a disability post I wrote back in March was such a hit that I wanted to do a follow-up. I think sometimes society has a hard time understanding that people with disabilities want the same things everyone else does: love, success, lifelong friendships. And those things are attainable for the disability population. However, it may just mean there are more logistics to figure out.

In the case of dating, for me that meant thousands of questions were going through my head: 1). When should I tell him about my disability? 2). How will he respond? 3). Will he care? 4). If we get serious, will he resent me for what I can’t do? 5). If we get serious, will he feel like my caretaker?

Even now, after my boyfriend and I have been dating for 3 and a half years, some of those questions still surface. However, we’ve dealt with them just like we’ve traversed the rest of our relationship: with openness, frequent communication, and love.

When should I tell him: Honestly, it was answered on its own. Because my disability is visible, it’s not something I could hide. No, I didn’t have a “I have CP” tattoo on my forehead, and I have never introduced myself to someone by saying, “Hi, my name’s Amelia, and I have CP.” However, I’ve always prided myself on being open with people. The reality of my disability came out pretty early on…and even though I fretted over how the conversation would go, it went as smooth as though I had said, “My day was good, how was yours.”

How will he respond: My Cerebral Palsy mattered to him, but it didn’t all at the same time. It didn’t prevent him from wanting to date me. However, it mattered in the sense that he wanted to understand it enough to know how to help me when he could, which I was grateful for. More than anything, he wanted to know how living with a disability shaped the way I viewed the world. And in that moment, I knew I wanted to spend my days helping him to understand the world I lived in: the world of oppression, marginalization, discrimination…but also the world of a culture that has its own language, values, history, and perspective.

Will he care: He did. But he cared in the sense of, “It hurts me to see you in pain,” as opposed to, “I don’t want a girlfriend who has a disability.” Yes, it’s part of our relationship, but it’s not the only piece. It means we have to do certain things certain a little differently, but it doesn’t prevent us from loving each other. However, I will say it does take a special person to care in this way. You want someone to care enough about your disability that they see it as part of you, but not so much that it is the only thing they see when they look at you. I’m happy to say that’s what I’ve found. And honestly, each day it amazes me. Sometimes it still takes my breath away that I’ve found someone who cares enough about my disability that he has taken up the disability fight out of sheer love for me. For example, the first time my boyfriend became enraged when he saw a car parked in a handicapped space without an appropriate license or placard…I felt heard, I felt seen, and finally, I felt like I didn’t have to face the injustices of the world alone.

If we get serious, will he resent me for what I can’t do: Honestly, I still worry about this one. Since we are serious, it’s a thought that bounces around in my head pretty regularly. And since we are so open with each other, it’s also conversation we have often. Do I think he resents me now? No. Do I think there are things he wishes we could do together that my disability prevents? Sometimes, yes. The majority of those things have been centered around activities that require extended walking. However, about a year ago, when I invested in a mobility scooter, a new world opened for us. With my scooter, I was able to get out and be more active and not be as easily exhausted like I’d get if I was walking everywhere. Therefore, we’ve been able to enjoy things like going to the mall or walking around downtown, whereas previously I’d avoid those things because more walking meant pain…and pain meant both of us being unhappy. However, in another sense, sometimes I worry how my disability will impact me as I age. What if in two years I can’t do what I’m doing now? I’d be lying if I said I didn’t worry about it. But if I know one thing, it’s this: I’ll figure out a way to handle those obstacles as they come my way. I always do. It’s who I am.

If we get serious, will he feel like my caretaker: I still worry about this one too. It’s a conversation we have very openly, as neither of us wants to reach a point where we have a caretaker/patient relationship. Honestly, what’s made the difference is understanding and perspective. Are there things he has to help me with? Absolutely. But do I help him with aspects of himself that are weak because those are my strong areas? Yes. At the end of the day, that’s what it’s all about. The give and take. In my case, many of the ways my boyfriend supports me are physical in nature, but he’s also incredibly kind, loving, and caring too. When I look at a caretaker/patient relationship, I see it as very one-sided. And that’s not what our relationship is. It’s two people supporting and strengthening each other to be the best versions of themselves.

At the end of the day, dating with a disability is just the same as typical dating, but with a double scoop of openness, communication, understanding…and a dash of humor (because if we’re not laughing through life, what’s even the point).

Categories: Cerebral Palsy, Disability7 Comments