Practicing Courage and Resilience While Living with a Disability

As I write this month’s blog, I’m sporting my hand brace for the healing process of a re-injury.

I’ve been reflecting on my blogs and the lack of comic relief. So what better time to try and make light of a very challenging disability than after Disability Pride Month! 

I reinjured the ligament in my right hand doing a lifestyle task. I will spell it out for those who aren’t familiar with the ‘we can’t make this shit up’, ways of getting injured. And the task was….

…removing a tampon—true story. 

This may come as a surprise for some readers who are unaware of invisible disabilities like Ehlers-Danlos Syndrome, but for others, they are reading this and nodding their heads in agreement.

The key word above is, ‘invisibility’. Some of the biggest challenges of people with invisible illnesses is that we are approached with skepticism, minimizing behaviors and disregard.

Creating visibility for some invisible illnesses may not be possible through the body, but instead through our voices and actions.

Speaking of raising our voices, going back to the story… take a moment to visualize the conversation when I told my new male doctor how the injury occurred.

I felt no guilt for his shock and uncomfortability because I knew that I was in a bit more discomfort at that moment. I then went on to explain just how common it is for me to injure and especially reinjure my tissues because for instance, the first time I tore this ligament, it was while rolling over in bed… shocker.

Resilience is important because I’ve been down this road before, only this time I was wiser in how to heal. For instance:

• I have an assortment of braces for every joint in the body for when an injury occurs so I can continue with what I have to do in life as best as I can.
• I’ve mastered allowing the nondominant hand to take over daily tasks, but also bringing back that awareness that sometimes one injury can lead to two, then three or more. So, how can we find ways to alter our bodies in order to provide what we need at the drop of a dime?
• I give my body more credit for what it can do.
• I give myself the time to be angry, frustrated, sad and confused by accepting the feelings that often come along with these challenges.
• Mindset: Let’s begin again. I learned to start back up, even if it meant I fell a few steps back. It doesn’t make any of us a failure if we are moving at the pace that feels right in order to get our groove back.

With a hand injury, one of my common thoughts is, ‘How can I keep my body, especially my shoulders aligned while I have to adapt to this injury?’

This traumatic memory of six injuries at once pops up time and again. When my entire body, head to toe was atrophied, it was like a bunch of puzzle pieces trying to rebuild stability, while avoiding re-injury. The injuries and subluxations have occurred along the way, but what I carry along with that is my determination to find a little bit more strength again. Then I do my best to refocus on moving forward and healing the present injury.

While temporary, it is a ton of mental gymnastics.

I’ve made it my life mission to try to heal from the inside out and hope for greater research for those with genetic conditions to alter how our DNA performs in the future.

When I talk to someone uneducated on certain invisible disabilities and they notice a brace is missing from my body, their remark is, “It looks like you’re feeling all better now?”

At first, I would fumble on my words, reply with shrugged shoulders, a “yes”, or skip the subject.

The reality is, sometimes l have a brace or a mobility aid and sometimes I do not. I’ve learned to become accustomed to this and I hope all of our loved ones and peers can do the same.

I’ve come up with a short couple of sentences to create clarity for those curious about what we go through, but not too much where I drain my energy.

“That injury did improve and as I keep up with my exercises and health, it’s my hope that injuries stay fewer and farther between. But it’s inevitable that I will have injuries if I want to live my life fully and that’s okay too.”

Here are some compassionate response ideas for an able bodied person to a disabled or chronically ill person:

• “That sounds hard.”
• “Would you feel comfortable telling me more about ___ so I can better understand what you experience?”
• “What do you need right now?”
• “What is a good resource that I can find to learn more about your condition?”
• “No need to take up energy explaining it all, I will do my own research.”
• “It makes sense that this is frustrating.”
• “I may never fully understand what you go through, but I will listen and try my best.”

My story is unique to me, as well as you, your loved one or neighbor down the street who, their challenges, you may know nothing about.

As someone with a history of minimizing my own experiences, emotions and struggles, I do keep in mind the challenges of others far more critical, especially with EDS.

I stand, sit and lay strong in my advocacy for the disabled community, a community that I joined after finally getting answers 28 years into my life.

May we take our discouragement and reframe it into courage and empowerment. 

The courage to:

• Raise our own voices for ourselves, others and for a community struggling every single day for better answers and greater care.
• Wake up everyday knowing that our mere existence is enough to light up a room and energize other souls.
• Inspire others to conquer the challenging days and rest when it is needed most.
• Speak our most authentic truth even if we gasp for air due to the relentless anxiety that decides to join the party.
• Look people in the eye and say that we hold just as much of an important role in society as anyone else.

Lastly, just treat us like any other human being with respect and accessibility.

So I ask, how can we conquer our fears of feeling misunderstood by instead speaking out regardless of the responses or lack thereof? My hope is for more conversation from these blogs in the message box below so we can create stronger resilience, community and connection.
_________________________________________________________________________________________________________________________________________

Macy Cassera is a mental health coach, ambassador and freelance blog writer. She has prior experience as a model in New York City for fashion, commercial and parts modeling. Macy combines these passions with mental health awareness to underpin our sense of self and strive for a world of inclusivity and equitable representation. To get in touch with Macy, please send her an email or send a message through her official website or Instagram.