Author: Amelia Hall

The other side of motherhood.

Amelia Hall # # # # #

I feel like people don’t talk about the dark side of parenting. They talk about the good stuff. First smile, first laugh, first steps, first word. They talk about the immense love they felt when their child was placed into their arms. Sure, they may loathe the sleepless nights, the tantrums, the constant nagging, but overall, I feel like most people say the good outweighs the bad.

But what about those of us who are on the other side of motherhood? The “I hate everything about this” side. The “I wanted this so bad, but as it turns out, I don’t like it very much at all” side. The side where the good doesn’t outweigh the bad. What do you do then? If you know, I’d like to know the secret.

Because that’s where I am. That’s where I’ve been for quite a while. Whether you want to call it mommy blues or postpartum depression, it’s where I’ve lived for a while. But you see, it’s not just a room I’m renting, but a house I own. I’m not simply living out of a suitcase. I’ve unpacked. There are used plates on the kitchen counter, laundry littered across the bedroom floor, and empty pizza boxes in the trash.

I have a 2 and a half year old, and I’ve been in this place for quite some time. Honestly, the fact that it took me this long to start writing about how I’ve been feeling surprises me. Most people who know me know that I gravitate toward writing like oxygen, but over the last few years, my career and motherhood have taken priority. For good reason. However, I also feel like I’ve neglected a form of self care I used to use on a regular basis. Writing is very cathartic for me. It’s always been that way. It’s always be where I turn when I can’t make sense of my thoughts and feelings.

So here I am. In the trenches. Wading through the shit. And trying like hell to figure out how to keep my head above water. Not so I can bitch and moan. But simply to say, “This is my truth.”

What I know is I’m in a really hard place in my life right now, but I want to feel better. I want the people I love to know the me I used to be….not the depressed shell of myself I’ve been over the last few years. I want to be better, for myself but also for my son. He deserves so much more than what I’ve been able to give him over the last 2 and a half years.

I imagine many, many other parents have been in this place. And maybe that’s why I’m writing this. To find connection. To build community. To try and feel a little less alone.

Categories: Motherhood

Not the reality I envisioned

Amelia Hall # # # # #

For years, I wanted nothing more than to be a mom. I wanted the little pink clothes (even though I hate the color pink). I wanted the cuddles, the snuggles, and the intoxicating baby smell. I wanted more than to just be a mom though. I wanted specifically to be a mom to a baby girl.

See, I was supposed to be a twin, but my twin was lost very, very early in my mom’s pregnancy. So early in fact that it couldn’t be determined whether my twin was a boy or girl. In my mind, though, I always had a twin sister.

When I found out I was pregnant, I wanted nothing more than to have a baby girl. I wanted the chance to meet, love, and be with the twin I lost. I knew my baby wouldn’t be my twin sister. I knew science didn’t work that way.

But as these things go, I hoped. I hoped for a carbon copy of not myself but someone who could have been my twin. Someone with my laugh, my personality, and my fierce need for independence. Someone very, very much like me, but not identical. Maybe she’d be extroverted to my introverted nature. Maybe she’d love pink to my love of the color purple. Maybe she’d stray towards Barbies and all things glitter when I wanted nothing more than to play with baby dolls. But, maybe….just maybe….we’d be alike in some ways too. Maybe we’d both love to read and gravitate towards books like oxygen. Maybe we’d both have a laugh that had the power to light up a room. Maybe her eyes would crinkle when she smiled really big. Maybe she’d have the cutest nose freckles you’ve ever seen. Maybe she’d be the shadow I so badly wanted.

But the Universe had other plans. You guessed it. I had a boy. But not just any boy. I had a boy that is a carbon copy of my wife. They look alike. They act alike. And they both have autism.

Because of autism, they have a connection I’ll never fully understand. And I’m glad they have that bond. I really am. But sometimes, I feel like they’re part of a club I didn’t get an invite to. I feel like they know the secret handshake that I’m not privy too.

And it guts me.

I’ve been struggling to connect with my son in my own way. Most days, it doesn’t happen. But sometimes, there are glimpses. Teeny, tiny glimpses. Ever so slowly, over the past week, that connection has made itself known. We’ve implemented reading books before bedtime. My son may only be focused on turning the pages at this point and may struggle to sit still, but it’s a start. It’s something. It’s not the beginning of the reality I envisioned, but it’s my reality nonetheless.

Categories: Motherhood

Pregnancy With a Disability: A Series

Amelia Hall # # # #

I have wanted to experience pregnancy and motherhood for as long as I can remember, but due to Cerebral Palsy, a physical disability that affects my muscle control, I was unsure whether it would be possible. When I found out I was pregnant in December 2020, I was equal parts ecstatic and terrified, which are two very common emotions when women first learn they are expecting. For me, though, there was an undercurrent of “Can I really do this?,” “What barriers will my disability cause?” and “How will my pregnancy be different than able-bodied moms?”

Not surprisingly, there is very limited research on Cerebral Palsy and pregnancy. Prior to getting pregnant, my OB-GYN and I talked extensively about how my disability could complicate things. The main point she brought up to me was being unsure whether I’d have the capability to deliver vaginally due to the spasticity I experience as a result of my Cerebral Palsy. Therefore, she referred me to a Maternal Fetal Medicine Specialist to get some answers based on my specific circumstances.

At my Maternal Fetal Medicine appointment, I was asked to talk about my Cerebral Palsy and how it impacts me on a daily basis. I discussed my spasticity, the fact that my CP primarily impacts my hips and legs, and my lengthy surgical history. The first doctor I spoke with (we’ll call her Abigail) had done some research on modes of delivery for CP pregnancies. As it turns out, the most recent study available was from 1992, the year I was born. The research highlighted that those with Cerebral Palsy who had undergone surgeries on their lower extremities as children were more likely to require a C-section than those that did not….aka women like me. This wasn’t a shock to me, but I think a small part of me had hoped that vaginal delivery was an option. The next part of the appointment involved an exam to assess the range of motion in my hips and legs. I knew without even attempting to get into the positions they asked that my body wasn’t going to cooperate. Ever since I had reached the age for pelvic exams, I had never been able to put my feet in the stirrups at the doctor’s office due to the limited mobility in my legs and hips. However, not wanting to leave any stone unturned, I tried anyway.

As expected, the mobility wasn’t there. Abigail then informed me she wanted to bring in her boss to get her opinion as well. “The more, the merrier,” I remember saying. Abigail smiled and went to get her colleague, Danielle. Once both doctors returned, I was asked some of the same questions as before, but these were focused specifically on the surgeries I had as a child. Danielle happened to be the head of the high risk pregnancy department. I felt like I was getting special treatment or that something was very wrong. Thankfully, neither were true. She then informed me that she had no one in her department with knowledge on pregnancy and Cerebral Palsy. Instantly, my hope dissipated. But then, Danielle’s phone rang. “I’ve got a specialist on speed dial,” she said, before leaving the room. She came back in a few minutes later, and the call was on speaker phone. Daniel informed me, “My daughter, Lexie, is a pediatric orthopedic surgeon. She has much more first-hand knowledge and experience of the specific surgeries you’ve had, so I’d like to get her input.” I nodded, then introduced myself and began going through my surgeries one by one. Lexie then asked me where I had my surgeries and if I remembered the name of the doctor who performed them. Not only did I know who operated, but I also remembered the exact medical terms for all the surgeries I had undergone. The doctors at the Maternal Fetal Medicine Clinic seemed impressed by this. If they only knew the reason I remembered these things so vividly was because of how traumatic they had been for me as a child.

Then, Lexie said something that made my jaw hit the floor. “The doctor who performed your surgeries…he was my primary mentor and teacher.” What a small world, I thought. She then informed me he now practiced at a children’s hospital in San Francisco, and I couldn’t help smiling about what a reach my disability and life truly had. She then asked me a question I’ll never forget: “What is your preference for how you’d like to deliver?” I knew this question was coming, but it still surprised me. By this point, though, I had made up my mind. “I’d like a C-section,” I said. “They’re done all the time, and giving birth is going to be hard enough and full of anxiety. I don’t want to also be spending that time worrying about whether my body will cooperate from a mobility standpoint.” And that was it. It was decided. I’d have a scheduled C-section.

Before Lexie disconnected the call, she said, “Congratulations on the pregnancy.” She didn’t know that I wasn’t currently pregnant at the time, but the sweet gesture made me smile. For the first time, this felt not only very highly possible, but I’d learned that I’d have a stellar team of high risk doctors keeping a close eye on me once I became pregnant.

My partner and I found out we were expecting on December 21st, 2020, just a few days shy of Christmas. Since then, this journey has been nothing but a whirlwind. A scary, exciting, anxiety-ridden, wonderful, beautiful whirlwind. I think I knew even on that very first day of learning such life-altering news that I was about the embark on the most amazing journey, and boy was I right!

Come back next week to read my next blog post, titled “Pregnancy With a Disability: The First Trimester.”

Categories: Disability, Pregnancy

Getting Married with a Disability

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

Today marks two weeks since I married the love of my life. I’m still catching myself saying my maiden name as opposed to my new last name, I still haven’t written thank-you notes, and there are wedding gifts still in their original packaging. But as I sit and reflect on my wedding day, I feel nothing but love and gratitude for the friends and family who helped to make it the best day of my life.

Like many girls, I spent my life thinking about what my perfect wedding day would be like. However, unlike most girls, my focus wasn’t on the details like the color scheme, flowers, table decorations, or the seating chart. I cared about one thing: the man who’d be standing opposite me as we promised to spend forever together.

Continue reading Getting Married with a Disability

Categories: Disability4 Comments

Back to Basics

Amelia Hall # # # # # # # #

*This post was originally written in my journal, which will make more sense as you read, but I wanted to share it here too.*

The amount of unfinished journals I have lying in the crooks and crannies throughout my apartment is too numerous to count. Due to my love of writing, every year as a kid for Christmas or my birthday, I’d inevitably be given a journal from a family member or friend. I’d write in it for a day or two, and after a week went by, the journal got lost among the many books I wanted to read, never to be seen again.

Over time, as technology has evolved, so did the method of my writing. Gone were the days of pen and paper and in came the days of online journals and blogging. The fact that I can’t remember when I last wrote in a journal (except for now, obviously) is sad. Yet, here we are.

Over the past few months, I’ve been pretty stressed. But when you consider that I’ve been busy with wedding planning, starting a new job in October of last year, and the daily struggle of not only surviving, but thriving, the stress is understandable. Self-care needs to be a priority right now. I’ve told myself that and my therapist has told me that, but it doesn’t always stick.

I work in the helping profession, and in my case, “I love helping others” translates to “I help others long before I help myself.” However, I also know, thanks to my advanced education in counseling and social work, that in order to be of use to the people I’m helping, I have to make myself a priority. Easier said than done, right?

But, that’s where journaling comes in. A few days ago, I was mulling over my typical go-to self-care activities like taking a bath and listening to music, only to realize that those activities don’t get me out of my head enough to allow me to calm down, which I need these days. Then my therapist mentioned journaling, and I said, “But I only feel like I can write a blog post when I have something to say.” Then my therapist said, “What about writing in a journal that no one but you will read?” As crazy as it sounds, that hadn’t really crossed my mind.

For the past 7 years, blogging has been my go-to in terms of writing, which has been great. Along the way, I’ve become part of a wonderful community of fellow writers that I love. However, there is something to be said for writing with a pen and paper vs. typing. Honestly, I think part of it is because I’m at a computer most of the day at my job, so when I finally get home at the end of the day, sitting in front of the computer is the last thing I want to do, even if it is to write. The other part though is the environment. On my computer, there’s email, Facebook, YouTube, Pandora, and all sorts of other distractions. But with a pen and paper, it’s just me, my thoughts and a blank page. It’s quiet, serene. As I sit here writing longhand I am very mindful of the peace I feel internally. I’m not distracted, I’m not worried about what anyone will think or say…because the only person these words will benefit in this exact moment is me. For the first time in months, I feel at peace. I feel a sense of calm I haven’t felt in a long time.

And that, my friends, is what it’s all about. Getting back to writing because of the way it makes me FEEL…authentic, free, and the truest version of myself I’ve ever known. Not writing because of what other people want to read, but because it’s what I need in order to be the best version of myself that I can be. And if I have the option to be that person, shouldn’t I take it?

Categories: Mental Health3 Comments

Healthcare Access & Disability

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

Access to good quality, disability-inclusive healthcare is a hot topic these days in the disability community, and for good reason. It’s hard to find. A lot harder than you think. Why? Well, a multitude of reasons, honestly. In my opinion, it boils down to a lack of adequate disability awareness training in medical school, a lack of medical professionals WITH a disability to represent the community (I have seen a FEW, which is awesome, but still not enough), and a lack of formal training on the “culture” of living with a disability (such as pointing out barriers people with disabilities face when trying to find adequate healthcare, education, employment, housing, and transportation).

Personally, I think the two biggest reasons disability-inclusive healthcare is so hard to find is due to the lack of disability awareness training in medical school and the lack of understanding of disability as a “culture” and “community.” For me, “disability culture” is simply my perspective of living with a disability. While these perspectives can vary widely depending on the type of disability and your comfort level with identifying yourself as a member of the disability community, the way you express yourself within the context of disability culture is just that: an expression of your own unique experiences. However, with that said, there are some commonalities as well, such as the history of disability, the social aspects living with a disability, and the tendency to view disability just in terms of access.

When I say disability access in terms of healthcare, I don’t just mean physical access. While physical access is indeed important, the societal barrier of accessing quality, disability-inclusive healthcare holds even more weight in my opinion. For instance, when I was a junior in college, I started going to a physiatrist  to have someone monitor my Cerebral Palsy as an adult. Physiatry is a branch of medicine that aims to enhance and restore functional ability and quality of life to those with disabilities. You would think a doctor in this specialty of medicine would be incredibly in tune with the needs of the disability population and would have a deep understanding of disability culture. You would be wrong (in this instance, at least).

The physiatrist I saw understood disability in terms of the medical model. The medical model of disability says people are disabled by their impairments or differences. Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness. How should have this physiatrist altered their perspective of disability, you ask? He should have attempted to view and understand disability from a medical AND social context.

The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. In short, the social model of disability focuses on empowerment and inclusion.

To be honest, I fall somewhere in the middle of those two models. For instance, I believe that societal perceptions of disability and disability stigma and stereotypes are the biggest barriers people with disabilities face. That being said, I very much understand the biology behind Cerebral Palsy and know that my CP wasn’t “caused” by societal perceptions. It was caused by the fact that I was born three months premature and didn’t receive enough oxygen to my brain when I was born. However, I do feel that societal perceptions of disability have further exacerbated the difficulties people with disabilities face. They definitely haven’t made them any easier, that’s for sure.

I think so much of the time when people think of barriers for people with disabilities, the first thought is physical access. I hope that as the disability community grows and as I continue to speak out on issues that greatly impact my life, others will see that it’s SO much deeper than just the fact that I was born with a disability. Yes, that’s true. But the reason it can feel almost impossible to live with a disability some days is not because of the disability itself. It’s stereotypes. It’s stigma. It’s a lack of understanding.

I know bringing up disability is “uncomfortable” for a lot of people because they don’t want to potentially offend someone. However, please know, your inability to bring disability into normal every day conversation is a major part of the problem. Talk about it. Ask me about it. I won’t be offended. I’ll gladly paint a picture of what it’s like to live my life. And I’ll be honored that you cared enough to ask.

Categories: Cerebral Palsy, Disability, Education, Uncategorized6 Comments

My Journey Through The Blogosphere

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

I first started blogging in 2011 when I was a sophomore in college. At that time, I didn’t know what I was doing. I just wrote whatever came to me. This included life as a college student, music, books, travel, and eventually, my disability. There are days when I miss that blog, lifeintheblueridges. I miss the freedom of it, the peace of mind. I made connections with hundreds of people, some of which I still have today (I’m talking to you, Arianna and Cassie, if you’re reading this). I miss the level of connection and community I felt within the blogosphere. And for those of you who have stuck with me since the beginning, thank you. I am grateful, honored, and no amount of words could convey just how much you mean to me. My first blog felt like home, but over time, as I graduated from college and moved on to graduate school, my blog was no longer at the forefront of my life. At the time, I didn’t give it much thought. But now, thinking back, I regret not making it a priority. I get that life comes first and it’s okay that I put my career first, but writing should have been in the running for first place too. It’s always been my haven, my safe place, and the one place I felt 100% myself, but then I stripped it away without even really thinking about what I was walking away from.

When I graduated from college, I created this blog. I had read somewhere that finding a niche in the blogging community could increase traffic to your blog. So I did that for a while. I no longer wrote daily. It was a tiny accomplishment if I managed to write even one post every few months. I primarily wrote disability-related posts. And while some of the posts were incredibly cathartic, I didn’t feel the same level of community and connection I used to when I first became a part of this community back in 2011. I felt like I was writing for other people, rather than myself. And I know from experience what a tricky path that is to go down. It puts you at risk for losing yourself, and I think that’s what may have happened with me over time.

I don’t know if the blogging community has changed or I have. Honestly, it’s probably been a mixture of both. I know one thing, though. I miss it. I miss coming to an empty page daily and just writing whatever came to me as I did when I first started blogging. Sometimes, that was just a music video or a quote from a book I was reading, but it was me. It was authentic. My writing ebbed and flowed with my moods, the seasons, and life in general. Back then, I didn’t just post when I felt like I had something to say. I posted even on the days where I felt like I was trudging through mud and had no idea where to even start. I wrote anyway.

More than anything, I wrote for me. I wrote what I was feeling and what was in my heart. I didn’t have moments as I do now where I think, “What are other people going to think of this?” and “What kind of lesson or story am I trying to get across with today’s post?” Though there is nothing wrong with posing those questions before sitting down in front of the blank page, in my experience, it’s limiting. It put me in a box. A box that initially was comforting. However, eventually, I just couldn’t do it. I’m realizing now that those limitations kept me closed off from the community I so badly wanted to immerse myself in.

So, today, as my friend Arianna would say, I’m making the choice to show up. I’m pushing away thoughts of “Will others like this?” or “Will this post drive traffic to my blog?” As I’m learning, those questions don’t matter. Writing is what I love. I first started blogging solely for that reason. And I think it’s common to drift away from reasons you may have started on a journey in the first place. It was never about others. It was about me, writing from my heart, and feeling grateful when others connected with my words.

So even though I don’t know where my blog will go from here, I know one thing. It will be 100% authentically me. If we can’t be authentic and 100% ourselves, what’s the point, anyway?

Categories: Uncategorized2 Comments

Why Asking For Help As A Disabled Person Was The Best Gift I Ever Gave Myself

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

As much as I put on a “brave face” and strive to have a positive attitude on days when my CP has me doubled over in pain, there is a lot of internal frustration that comes with living with a disability. Typically, my blog has been a place to vent those frustrations. But I’d be wrong if those difficult days were the only memorable ones. Does my disability frustrate me? Absolutely. Are there days where I wish I wasn’t in constant pain? You bet. But at the end of the day, I wouldn’t trade my disability for anything. I really wouldn’t. It’s given me a perspective on life and allowed me to cross paths with some of the most special people I’ve ever known, and without my disability, I don’t know if my life would have unfolded in the same way. A blessing in disguise, I guess.

Typically, “good” days aren’t memorable. They are simply a small break, even if only for a few minutes, of the physical and emotional pain I feel as a result of being a member of the largest minority in the world. However, a few weeks ago, I had a “good day,” in a sense, and it’s one I’ll never forget.

I was going to Subway to get lunch and looking forward to having an entire hour to myself (yay introversion!). I took my walker inside, as it is my preferred method of mobility these days when I’m by myself because it prevents falls. However, when I got to the door, I realized my conundrum. I couldn’t get the door open and maintain my balance at the same time. However, thankfully, as I was attempting to open the door, someone inside saw my struggle and came to assist (thank you, kind human). I said thank you profusely, and when the gentleman just smiled broadly and nodded, I realized just how much people long to help others. Typically, it’s difficult for me to accept help as I feel like a burden, but I have to realize that typically people don’t offer to help unless they are genuine and truly do want to assist you in some way. That realization really came to fruition once I was done with my lunch, but I’m getting ahead of myself.

I stood in line to put in my lunch order, which for the first time wasn’t a big deal because my walker has an attached seat so I can sit whenever I need (best invention ever!). Anyway, I enjoyed my solo lunch, counting myself lucky to have received so much positive support from others during this difficult transition regarding my mobility. I then got up to leave, pondering in my head how I was going to exit Subway without possibly falling over or calling even more attention to myself. It was in this moment that I knew the best course of action was asking for help, so when I eyed a group of EMTs eating lunch, I asked for assistance. One guy was so excited to help he practically bounced out of his seat mid-bite to assist me, replying “Of course!” with the most genuine smile I’ve ever seen. I thought I was going to fall over (ha!) from happiness.

I thanked him over and over for his generosity, happy to know there were still kind people in the world, but that wasn’t even the best part. A few minutes later, I got to my car, opened the truck, and went to place my walker in the back like I’ve done hundreds of times without incident. However, this time I lost my balance, and because my hand was still on my walker as I was falling, my walker fell on top of me. Don’t worry, I’m fine. But it sucked. I felt embarrassed (as usual) and just aggravated at my body for not cooperating.

After a sigh of relief and a reminder to myself that the choice is to either remain on the ground or get back up, I rose to my feet. Once I was standing and started to close the truck of my car, I looked up to see the EMT from before sprinting out of the Subway. In my head, it felt like watching Baywatch, standing in awe as an attractive, shirtless man ran towards you to save the day (but he was only shirtless in my head, haha). He came up to me and said, “From the way you got up, I can tell this happens often, but is there anything I could do to help?” As much as I wanted to say no, the kindness in his eyes made me want to hug him. I didn’t hug him (which was the wrong choice because he was attractive, muscular, and looked like he could throw me over his shoulder with just a finger). However, I did take him up on his offer to help. I said, “You know what would be really great? If you could walk me to the front door of my car and help me get in safely.” The “of course” couldn’t come out of his mouth fast enough. Once seated safely, I looked up at him and said “To be totally honest, it is really hard for me to ask for help, but I’m so glad I did today.” He nodded, double-checked to make sure I was okay, and softly closed my car door.

I waited until he was back inside to cry the happy tears I couldn’t hold back anymore.

Categories: Cerebral Palsy, Disability, Uncategorized5 Comments

Disability Rights are Human Rights

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

About a month ago, I went to Cracker Barrel for lunch. I parked in a handicapped spot as usual, put up my handicapped placard, got my walker out, and went to enjoy lunch. When I was done with lunch, I came outside only to realize a huge SUV was parked in the access ramp space beside my car and was close enough to my car that my walker couldn’t get between my car and the SUV (and there was no access ramp on the other side of my car). Due to my Cerebral Palsy, lifting my walker above my head to get it out from between the cars was not an option. I also couldn’t collapse my walker and turn it sideways because I needed it for stability. I was, quite literally, stuck. Stuck in a situation that shouldn’t have even happened in the first place. And yet, I knew something similar would happen again, and I was right.

About a week after the incident at Cracker Barrel, my fiancé and I went out to dinner at Applebee’s for date night. We parked in a handicapped spot and he provided me with his arm for stability to help me get inside. Going out to dinner was just what we needed. It had been a while since we had a date night, and we wanted to further treat ourselves after a fun day of shopping. It was a great ending to an already perfect day. We came out of Applebee’s, hand in hand, and when I looked at our car, my smile instantly faded. Beside our car, another car was parked in the access lane, blocking the access ramp, preventing me from getting to the car, much less get inside it. The other car was parked so close to ours that opening the passenger door wouldn’t even be feasible. Infuriated, my fiancé marched inside and spoke to the hostess standing right inside the front door. He explained the issue, pointing outside at the two cars. At that point, a manager was called over, and the story was repeated.

A few minutes later, my fiancé came back outside, followed by a woman in her 60s who seemed extra annoyed to have been interrupted during her dinner. She looked at me, apologized, and simply stated, “I was helping my friend inside. She is in a wheelchair.” That meant nothing to me, not because I don’t support every member of the disability community, but because the woman was parked in an access lane and there was a perfectly free handicapped spot next to her that was not being used, not to mention the fact that where she had parked would have prevented her friend from using the ramp to get up on the sidewalk because the woman’s entire car was blocking access to the ramp. I was so mad, I couldn’t even respond.

And please, hear me out. I understand she was helping her friend. I totally get it. However, she could have helped her friend out of the car, gotten her settled into her wheelchair, and then moved her car to the available handicapped space next to her, or any other free parking space. Instead, she left her car parked illegally in an access lane for the entirety of her dinner outing, preventing another disabled person from using the access lane to safely and comfortably get inside the car.

My point is this: Please don’t park in access lanes. They are there for a reason! And there’s a reason there are blue cross marks through the space…because they are NOT parking spaces! That extended space is there for people who require more space entering or exiting a vehicle because not everyone has the luxury to move with ease. Please consider that the next time you go to park in a handicapped space (if you’re parking there without a handicapped placard or have parked in the access lane). You may be taking away someone else’s ability to enter a restaurant/building/business with ease.

Disability rights are human rights.

Categories: Advocacy, Cerebral Palsy, Disability7 Comments

The Mobility Chronicles: CP Edition [Part 2]

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

Back in January, I wrote a blog post and opened the door of my current mobility struggles, while simultaneously opening the floodgates of all the emotions associated with my declining mobility. In some ways, it feels like the level of those emotions has increased, but honestly, I think they are fears and concerns I’ve had my whole life, so now that they’ve come to light, it feels like I can’t even breathe some days because of my level of panic, anxiety, and unrelenting anger.

In between the time I wrote the initial post on this subject, I’ve gone back to physical therapy, which was a huge step for me. Past physical therapy experiences have resulted in a form of PTSD, so the fact that I was even able to walk in the building when I had my first appointment was a really big deal. I’ve only had two appointments with my new physical therapist, but so far, so good. During my initial appointment when I was evaluated, I spent 90% of the appointment discussing my past PT experiences, the panic and anxiety I now feel as a result of my past and the pain I experienced, as well as the experience I had when I returned to physical therapy 3 or 4 years ago for the first time since I was 16. To put it bluntly, returning to PT that time around didn’t go well. I had no idea I was going to have panic attacks, but I did, and they scared the crap out of me. Therefore, when I returned to physical therapy this time around, I knew what to expect in a sense. I was utterly terrified and it took a lot for me to even think about going, but I had a better idea of what my response would be.

Therefore, about a month before my initial evaluation appointment, I talked with my psychiatrist about my concerns, in the hopes that she could prescribe me with something that could at least take the edge off so I could walk in the door of the physical therapy clinic without having a panic attack. The fact that I even had to ask for a medication to help me made me feel weak. However, I have battled my depression and anxiety and been in mental health therapy long enough to know that sometimes talk therapy itself can’t 100% fix a problem, especially when it’s literally a chemical imbalance in your brain. Don’t get me wrong though. I’m not one of those people who thinks the entire country should be medicated. However, all I know is that for me, the combination of talk therapy and medication has allowed me to be a functioning member of society without feeling completely debilitated by my anxiety and depression.

Anyway, upon returning to physical therapy, knowing I had something that could help me from totally going into a panic attack and not being able to get through the appointment was a relief. It was like knowing I had a safety net if I needed it. I will say, though, another huge part of returning was getting myself mentally prepared that physical therapy this time around would not be the same as physical therapy when I was 11 or 12 that required intense physical therapy post-surgery. For me, that meant creating mantras in my head, like “You are in control,” “If it hurts, you can’t tell them to stop,” and “If you have to get up and walk out, that’s okay.” In short, the mantras help, but so far it has meant repeating them in my head over and over for the entire hour of my appointment.

In short, each PT appointment forces me to face internal demons that I’ve been battling since childhood, and that shit is hard. I remember the day a few weeks ago when I went to my first appointment. I got through it, but for the rest of the day, I was in a very thick mental fog. I had built the appointment up in my head, expecting a continuous panic attack. Since that didn’t happen, my mind had to adjust to the fact that what I was preparing myself for for over a month wasn’t as intense as I was expecting. Despite that, facing these fears head on on a daily basis is exhausting. I’m sure that over time it’ll get easier, but for now, it just sucks. It doesn’t feel fair. I shouldn’t have to have such an intense internal battle with myself on a daily basis, and yet, here we are.

Recently, I discussed my anger surrounding my declining mobility and having to use a walker with my mental therapist. In short, I’m infuriated with myself and my body constantly. I hate that my mobility has reached this point. I’m pissed that I didn’t do more to hold off this moment for as long as I could. It literally makes me want to scream and cry, simultaneously, on a daily basis. It’s not fair. I shouldn’t have to deal with this now. I thought I had 10 more good years of independent mobility without having to depend on the assistance of a mobility aid. But the universe had other plans.

To be honest, facing my declining mobility as a result of my disability feels like the hardest thing I have ever had to do. The simple fact of feeling like I am being continuously “mentally tested” on a daily basis is enough for even the most mentally strong individuals to take pause. So, today, I’m taking pause. I’ll pick up the fight again tomorrow.

Categories: Cerebral Palsy, Disability, Mental Health, Writing8 Comments