Tag: mobility

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

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

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