When I found myself looking toward an unfamiliar path at the beginning of my trauma, my thoughts mostly revolved around what had happened. I was in shock, and I did not know how to escape the situation I found myself in. After a stroke caused by a life-saving surgery, I was paralyzed. How would I move forward into an uncertain future? What I found after years of learning and reflecting on those initial days is certainly something worth sharing.

Trauma of any type is just that: a life-threatening experience in many cases that unexpectedly upends your world. And unfortunately, it is not something you can plan for in an attempt to brace yourself and your life for impact. The initial shock is overwhelming. During that time, it is easy to find, as I did, that other people (doctors included) are making decisions for you based on a form-fitted statistical mold they have created based on the experiences of those who underwent similar circumstances before you. What you need to realize is that what worked to get you initially stabilized from your trauma isn’t necessarily a constant over time. As you heal, you improve and grow stronger. Therefore, YOU must be the managing voice of change. 

However, as you are progressing, you also need to find a way to mindfully communicate with others in your orbit. What I mean by that is this: you must choose the right words to express how you’re feeling as you interact with family, friends, and your therapists. Your disability and limits create their own boundaries, and it’s ok to communicate your concerns with others. The trick is doing so with an open, objective, and patient mind and not coming across as intolerant, biased, or demanding.

In my ten years as someone with a disability and limitations, I have found that self-advocacy is a protective resource that helps me facilitate communications with others. It’s by no means something I consider as selfish, but instead something that I use to discuss my capabilities and inabilities. This tool is also helpful in discussing medications or surgical procedures with doctors and whether or not they are truly necessary. On the other hand, it’s also a tool that is useful as I communicate with friends and family.

Self-Advocacy at work:

Imagine you have been invited to a football game, you are disabled, and your ability to walk is not as good as those who invited you to come along. Where their thoughts are on the fun of watching the game, your thoughts are on the distance walking from the car to the stadium, navigating the crowds, climbing the steps to the row where you're seated, and stepping past everyone on that row to get to your seat. Once seated, you fixate on other things. Should you eat during the game or have something to drink? What if you need to go to the bathroom? Can you get to a restroom without falling as you navigate past all the people there and back again? Do you have enough energy to make it back to the car after the game, and will you be able to keep pace with everyone else? Are you even thinking about the game, and can you manage to let the fun from this happy day spent socializing seep in so you can truly enjoy yourself? This is a place where self-advocacy becomes a balance. 

On one hand, you need to think about expressing your concerns; yet on the other, how you express yourself may be the difference between whether or not you’re ever invited again. In this regard, self-advocacy is certainly not selfish—it’s important—but finding a balance in its use must always be measured. For those in your world who take the time to understand, are patient, and not judgmental, be grateful for their thoughts of wanting to include you. And by all means, thank them! 

The lesson beyond all I’ve said here is this: be patient and practice. Try not to shy away when you're invited to do something with others. Find a way to make things work; and through practice, the fun and happiness in what you’re doing will emerge before you. Find a way to be open and mindful, and you will prevail.