Our recent blogs that are posted are listed here …
- Disability and Friendships: An Interview & Insight into Both Worlds - July 7, 2020
“A friend is one that knows you as you are, understands where you have been, accepts what you have become, and still, gently allows you to grow.”
Recently I’ve done a great deal of reflection on relationships (platonic, as well as romantic). As I age, I become more aware of what I have, what I have accomplished, and what I still have left to do. I suppose that has a lot to do with the pesky construct of time and the pressures that come along with it. I’ve been fairly open about my struggles with anxiety, and two of my most prominent internal battles: separating my self-esteem and self-worth from my conditions and stop fearing that the stress of my realities will cause those closest around me to run away.
To many, that may seem like an irrational fear, but you see, it’s already happened to me. While I believe there were other factors, the reality is that my biological father walked away from me; too young, scared, and unprepared, he walked away and seemingly never looked back. That left a deep-seated wound that I’ve only now begun to recognize and heal from.
If one of my parents abandoned me, why would anyone else stay?
I’ve come to realize that “anyone” stays because I am so much more than Hydrocephalus and Cerebral Palsy. I try to be a kind person. I look for the best in people. I give of myself freely, and I am an unconditional friend. I have more “pluses” in my column than “negatives”. That being said, I recognize that loving me, and watching me go through what I do isn’t easy. Too often I hear others say how difficult it must be to go through what I do. I certainly don’t deny that it is difficult. However, my answer is that while it is no walk in the park, I believe it is harder for those who love me. I know no other way of being and this is simply a reality I deal with. However, I cannot even begin to fathom how difficult it must be for the people who love me to watch me struggle, and know that no matter what they do, they cannot cure me of this and the necessary interventions are completely out of their control.
Just as they can never truly understand what I go through (and I know they would if they could) I can never truly understand their perspective, either. It was that revelation that inspired this week’s topic! I reached out to two very, very dear friends of mine and asked them if they would be willing to be interviewed with the hope that their vulnerability and openness would help merge the two paths that are so deeply intertwined.
*Their responses word for word will be italicized.
- How does it feel for you to see me go through that the complications and/or surgeries relating to my two conditions?
A: It can be difficult at times to watch you go through what you need to for your conditions and corresponding surgeries. There are times when I’d just like to help you take the pain away, but I know that is not much I can do. When we’re not crying though, we’re laughing at the memories that could not have been made without your surgeries. A time that comes to mind is breaking down on the side of the road on route to the hospital. Overall, it can be a tragedy or a comedy, but I cannot imagine it any other way at this point.
A: It’s hard to see you go through it. Because of the love that I have for you, I want to be the one to take away from your pain. Either emotional or physical pain. But knowing that I can’t really do anything about it is sometimes hard to accept. But on the other hand, It’s kind of amazing to watch you handle it all with the grace and resilience that you have.
- Do you remember when I told you about my two conditions?
A: In the beginning, I was private about not badgering you with questions about your conditions. The general public can see your wheelchair and that is your business and yours alone, without adding the additional prying. You opened up to me about your conditions later on and what the eventual outcome would be. Both are breaking you down over time. We cried. It is not easy to hear.
A: To be honest, the first time I knew that you had 2 conditions was maybe 2-3 weeks ago. It was mentioned just randomly in a conversation (as most things are lol). As you sat on your couch. I think that was the first time knowing that you had two and also know the names of both actually. Weirdly, I never thought to ask.
- What were your worries and fears, either as a friend or about me? Were you hesitant to take that on?
A: My worry first and foremost has always been your safety. Over time though I realized despite the lack of control over you have over your conditions you are more in control than most people realize. Even when your joints pop and the floor just needs a big old hug, you embrace the floor like you would a member of your own family. The loud thud that resonates throughout rooms in your household is not easy to hear, but have learned on more than one occasion to give you your peace and just have a shot of rum waiting for when you get up. I have even come to find that my biggest fear should not be with your disabilities, but with your stubbornness and pride. They drive you to extreme lengths that most cannot comprehend.
A: The only fear that I have is that you won’t be able to live the life that you deserve. I worry that because of how strong you are there could be things you go through with your condition that I will never know about. And I don’t want you to feel alone in anything. I know you aren’t big into religion but really I feel like God made you for me. I don’t really think that I would have still survived these past years without you. You’ve talked me out of a lot of things without you even knowing. So in a selfish way, I don’t want to be without you.
I want to thank you both for so many things: thank you for opening your heart for my readers and my blog. Thank you for standing beside me, even when it wasn’t easy. Know that I appreciate you, and it is because of your unconditional love that I have the strength to get through this. This article is dedicated to you, and all the incredible men and women that comprise the support systems of my community.Read More »
- How does it feel for you to see me go through that the complications and/or surgeries relating to my two conditions?
- Adaptive Sports: 5 Reasons Why Adaptive Sports are Important to Children with Disabilities - May 22, 2020
Like many of my posts, this week’s topic was inspired by a conversation I had with someone in my life not too long ago. I have made it a general that those around me may ask any question they want, in terms of clarity as it relates to my conditions; all I ask is that it is respectfully done and if a term is used that is unkind or outdated, I will let you know.
Last week someone asked me “if you could play any sport, what would it be?” I answered confidently that basketball and horse-back riding were my favorite sports to engage im. It was then that I could see the wheels in her head turning. She looked at me very confused. Already knowing where this was going, I nodded my head and told her to proceed with asking the question(s) that was on the tip of her tongue.
“But, Ash, how can you play?” There it was. I began to explain to her all about Adaptive Sports.
Children’s Hemiplegia and Stroke Association defined Adaptive Sports, or Para Sports, as “competitive or recreational sports for people with disabilities. Adaptive sports often run parallel to typical sports activities. However, they allow modifications necessary for people with disabilities to participate.” (CHASA, 2020) https://chasa.org/adaptive-para-sports/
Adaptive Sports were introduced to me from an early age and the lessons I learned from them were so important to who I became as an adult. I have been horseback riding since I was about five-years-old. In fact, for much of my teen years I was training in hopes of competing in the Paralympics. (Sadly, I retired the summer of the London Games in 2012 due to an injury I picked up along with the decline of my health.) I also participated in a wheelchair basketball team during that time.
Adaptive Sports changed my life, and what’s more, it saved my life. It is my hope that by sharing the five lessons or values Adaptive Sports taught me, parents, supporters, siblings, and friends will encourage more participation.
- A greater sense of self
As a result of my participation in adaptive sports I developed a much stronger sense of self. My entire perception of my identity changed when I began participating in adaptive sports. No longer did I see myself as a deviant, so blatantly different from those around me. I no longer focused on my weaknesses, but instead on my strengths, along with my ability to adapt. (pun intended). It was during this time that I began to deeply challenge the negative self-reel in my head and challenge everything that I believed to be impossible.
- The importance of community
One of the most beautiful aspects of disability is the sense of community amongst its members. In my experience, it is unbreakable. Even now as a woman nearing her thirties, whenever I am out in the community and I come across someone with a disability, the connection and sense of familiarity are instant. That is such a beautiful thing. Let’s be honest, many fear what is unknown to them, or different. If you fall into those categories the general population may not always be the kindest to you. However, this is at the core of the community I am a part of. Scarred by that isolation and distance, taunting, and unkind words, most of those with a challenge, limitation, or disability will go out of their way to make another feel included.
- Learning how to lose with grace
One of the most difficult lessons a child must eventually learn is how to lose with grace. Adults try to instill in their children that winning is not the most important aspect of sports or games. Similarly, as a participant in adaptive sports, I had to learn how to depend on others, be a part of a team, and lose while holding my head high. For too long I thought that only applied to sports, but circumstances quickly taught me that it was applicable to the game of life. Life will not always go as planned. Obstacles are going to pop up unexpectedly; how you handle that disappointment, task, or roadblock is up to you. I was better prepared for this as a result of adaptive sports.
- Increased sense of self-esteem
For most of my teen years, I struggled to see the power I possessed because I thought of myself as different, which I then internalized to mean less than. Participating in adaptive sports dispelled with that incorrect notion! I was surrounded by beautiful, unique differences. What is more, each of these individuals was uniquely powerful in their own right. After a while, I began to recognize that what made me different made me stand out in the most beautiful way. It was only then that I was able to embrace my identity.
- Strengthened communication
Communication is a particularly powerful tool for those with disabilities. When we are constantly surrounded by specialists, doctors, personal care attendants, and well-intended friends and family, our voices may get lost on the island surrounding us. However, as the people that know our bodies, conditions, and limitations the most intimately, we must learn how to effectively communicate with the world around us. Adaptive sports played a large role in the development of my voice. Trust me, you learn how to communicate when you’re on a court with nine other people, shouting for the ball and calling out for help. As an adult, I’ve finetuned my assertiveness and ability to give feedback, but I acknowledge that I was only able to do that as a result of my participation in sports.
This has been my experience with Adaptive Sports and is the reason why I am such a large supporter of it. Not only does it provide a safe avenue for exercise, but it also promotes community, identity, and sense of awareness. Stop allowing the world to tell you that “you’re too this,” or “you’re not enough of that”.
Get out there, participate, and have fun!
- A greater sense of self
- The 3 Realities and Hardships of Travelling with A Disability - May 8, 2020
Good afternoon readers! I hope that you are all staying healthy and well during this pandemic. Like so many, I took a break from blogging and social media for a while so that I could focus on my mental and emotional health. I will return to posting every Friday, so turn on those post notifications and stay tuned. This week I was torn between two topics, but as a group, many of you were interested in travel. This post will be a bit different than my typical posts, but I think it is important to create the content you ask for.
I am going to divide this post into two sections: The three realities of travel when you have a physical limitation, as well as a list of my three favorite travel locations, along with my experience of accessibility during those trips. Traveling for many is a combination of excitement and worry; that is no different for individuals with a disability. So, what exactly do I worry about when I travel?
- Will my wheelchair make it to my final destination
This is the greatest stressor for me. As I’ve discussed in past posts I am fairly ambulatory, unless I am recovering from an orthopedic surgery OR I have to walk a significant distance. In 2015, I had a fairly complicated orthopedic procedure that left me unable to weight-bear or walk for about ten months. As a result, I was completely wheelchair-bound. This was the first time I experienced traveling with my own wheelchair, and let me tell you, it was stressful! At the time, the airline would not allow me to travel in it, and as a result, I had to use the airlines’ chair and check mine. The anxiety I felt whenever I thought about the airline losing it, or the chair not making it to my final destination was indescribable. Many have experienced what it is like to lose pieces of luggage, but imagine what it would be like to “lose” the freedom of independent mobility.
- Will I be left at the gate and miss my flight
This very thing has happened to me twice, (though I won’t mention the airline.) Whenever I travel I do so with assistance so that I have the support and a wheelchair to transport me from gate to gate. Most times, I am taken to an accessible seating section and the gate agent is notified that I need help getting to and from the aircraft. Now let me say that most of my travel experiences are positive and not a scene from a suspense film, but there has been situations in which the gate agents get busy, and I was forgotten. There was also an occasion where the agent did not approach me to assist me on the aircraft, so I walked up to the desk to talk to her, and in that five minutes, the wheelchair was taken from the seating area and I lost the ability to be wheelchair assisted.
- The screening process
UGH! Need I say more? Traveling became a little more complicated after the implant of my Programmable Shunt, which is magnetic. As a result, I can no longer go through the metal detector, as there is a slight possibility that it could influence the setting. I travel with a medical card so that I can avoid some of the annoying questions or looks of disbelief. As a result of not being able to go through the metal detector, I must go through a more thorough screening: pat-down, a wanding, testing of the wheelchair, etc. This process is more annoying (though I understand necessary) and a bit time-consuming. Having done this more times than I can count, I now go as prepared as possible: wearing a dress, loose pants, easily slipped off shoes, and I arrive earlier than most, just in case anything comes up.
I am someone that loves to travel, despite the challenges of traveling with a disability. It was almost impossible for me to choose three favorite locations, (nothing is as special as my home, Bermuda), but these are three locations that I don’t think I would get tired of visiting.
- England I was lucky enough to reside in Brighton, England when I was training for the Paralympics for Para-Dressage. (I retired after 2012 when my health took a severe decline). The beauty of the countryside is something I could not describe. There was such a cultural infusion where I was staying at the time, which helped me feel like I wasn’t so alone. At the time I did not use a wheelchair but I did struggle walking around town because of the cobblestones and I think that would have definitely created a challenge to push the wheelchair, but still, it is still highest on my list.
- Hampton Beach I was born and raised in Bermuda, so it goes without saying there is a place in my heart for anything or any destination that reminds me of my island roots. Hampton Beach was great in terms of being able to smoothly travel in my wheelchair, however, a lot of the seaside stores were not accessible. There were steps to get into the shops, and once in, there was little room to smoothly move around without feeling like a nuisance. That being said, I am a person with a disability living in an able-bodied world, so adapting is the name of the game.
- Boston Boston was a city that I learned to love in time. For about 20 years it was where I received my treatment, so I had to learn how to navigate the mental fear that I had, as I didn’t always have the best memories there. However, after I re-located, I began to see that Boston has a phenomenal transportation system, it is set up so that I could safely and independently live.
Tell me, what are your favorite travel locations?
- Will my wheelchair make it to my final destination
- National Cerebral Palsy Awareness Day: Here’s to my fellow warriors! - March 25, 2020
Today’s post is in honor of National Cerebral Palsy Awareness Day. CP is a generalized, umbrella term that is used to describe “the way it affects people’s movement, the part of the body affected and by how severe the effects are.” (Cerebral Palsy Alliance, 2018). https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/types-of-cerebral-palsy/
Did you know that there are three categories of Cerebral Palsy, that uniquely impact the individual?
Quadriplegia– Each of your arms and legs is affected. An easy way to remember this is “Quad” means four.
Diplegia- Each leg is affected.
- Hemiplegia- One side of the body is affected. (For example, one’s left arm and left leg.)
I was diagnosed with Spastic Diplegia Cerebral Palsy. Quite a mouth full, right? Let me break that down. Spastic refers to the portion of the brain that controls movement, and as highlighted by the definitions above, Diplegia indicates that each of my legs is impacted. Something that I’ve always found incredible is that individuals that share the diagnosis can still present so differently from one to the next. Each person making up a unique pattern of a quilt that holds us all together.
In the spirit of awareness, here are a few of the realities I wish people understood.
- The condition is not contagious.
- Representation is everything!
- Ableism is difficult to deal with.
I am not going to sit here and tell you that I had a bad childhood, in fact, it was quite positive. However, like many individuals (able-bodied and special needs alike) I was certainly the target of isolation, cruel words, and at times, mean nicknames. I remember on more than one occasion welcoming a new student to class, for them to look at me and say “stay away, I don’t want to catch what you have!” it seems minimal now as an adult but as a child, it was particularly hurtful. My condition is a result of a brain injury, not a germ. I assure you, you are not going to catch it by being around me!
I am thankful that society is evolving and beginning to challenge itself. With social media now being such an integral part of everyday life, we now have the ability to showcase, include, and challenge what is a “norm”. Model Jillian Mercado, bodybuilder and model Nick Santonastasso, and designer Christina Mallon, have all been among the trailblazers that are smashing barriers which recognizes the beauty in differences. The Paralympics was such a source of inspiration for me. Not only did it showcase incredible athletes, and individuals in their own right, but it was one of the first times I realized I was capable of greatness because I looked up to them!
Ableism, which is generally defined as discrimination in favor of able-bodied persons, is one of the biggest challenges in our everyday lives. An example of this was the concerns that I had prior to a family vacation, which took place on a cruise. I had to consider whether or not I was going to bring my wheelchair. Did I want to take the chance of the airlines misplacing it? Would the cabin on the ship be able to have a space large enough for me to store it overnight? Would I even be able to safely and comfortably maneuver my wheelchair throughout the hallways of the ship? These should not have to be factors that I needed to take into account, because ultimately, my disability is not the burden, rather inaccessibility.
Today I challenge you to look beyond your own perspective and lense. I encourage you to do everything you can to be an ally. If like me, you are a person with disability, I hope that you take a moment to reflect and celebrate everything that you have accomplished. We are in this together, so let’s continue to change the world!Read More »
- Why I Stopped Hiding the Harsh Realities of Chronic Illness on Social Media - March 6, 2020
Social media, it’s time we have a little talk.
Don’t get me wrong I use social media, often. As a blogger, it promotes communication, networking, and provides the means to connect with those I may not have otherwise had the opportunity to. True to its name it is a hub of social behavior, that does not, however, mean that it is a true and accurate depiction of an individual’s life.
Take a second to think. How many times have you staged a photo? Have you ever taken an amazing selfie of your top half, while wearing pajama bottoms? Have you ever arranged the subject of your picture in an attempt to get the best lighting? The reality is social media isn’t about depicting “reality” so much as it is about creating an illusion that we’re happiest with.
I am certainly guilty of this! In fact just this past Saturday I posted an article on the blog, and most people would not have been aware that I had done that from a gurney in the triage of a hospital. (thankfully all was okay and there was no cause for extreme worry!) Immediately after though, I thought about the hours that led up to that current situation. I remember communicating to my residents that I was “tired, but otherwise fine.” I told my coworker very calmly “I’m okay. Hopefully, this is just routine. See you tomorrow!”
Meanwhile, my hands were shaking and my mind was going to the worst-case scenarios. Was I minimizing my symptoms for the comfort of my coworker and residents, or was I afraid to be a burden? I suspect it is more the latter. Too often I find myself thinking that I am a burden to those I care about. Every once in a while I find myself pushing away these intrusive thoughts that if I were healthy and free of either condition the lives of my family members and loved ones would be easier.
I know that is not true. I know I am not a burden and that those are the thoughts of my deepest, darkest insecurities. I believe that I was blessed with a purpose and a drive that is a direct result of the very subjects which are also my insecurities.
After I was discharged from the hospital I posted a photo that showed the bruises from failed attempts at IV access. Right before I did that I reflected on a conversation I had with a friend a few weeks prior to this event.
“Ash, you seem so happy. You look healthier! I’m happy for you.”
Ironically enough, they told me this on the day after I met with an orthopedic surgeon to discuss options that could possibly address an issue I have been struggling with since October. With that comment in mind, I unapologetically posted the photo. My goal this year was to heal from the inside out. I no longer wanted to simply survive life, I wanted to thrive. I wanted to strengthen friendships and connections in my life. In order to do this, I needed to stop hiding.
I needed to be truthful, communicative, as well as brave; and my relationships have strengthened as a result. I encourage you to do the same. Keep posting those amazing selfies! Keep finding that fantastic light! Also, know that in bringing your truths to light, by letting go of your pursuit of “social media perfection” you may find that you have amazing support and strength around you that you would not have otherwise discovered!Read More »