My story started in January 2021. My town had just begun our second lockdown of the Pandemic, and I was actually looking forward to several weeks of rest without obligations. My brain had other plans.
One day, out of the blue, I started having tremor-like sensations on the left side of my body which I would later be told were seizures. I visited the ER three times in less than two weeks before a neurologist was able to intervene. The neurologist confirmed that the seizures were caused by an AVM in my brain that had begun to bleed out. Two months later I had an emergency embolization and craniotomy to remove the AVM.
The craniotomy left me completely paralyzed on the left side of my body. I spent the next seven weeks in the hospital and experienced virtually every unimaginable traumatic experience possible; from being misplaced while being transferred out of the ICU, to having a ceiling lift dropped on my head, being misguided, and uninformed. I fell through dozens of logistical cracks.
It’s been two years now since my surgery, but recovery is a never-ending journey. It has required me to leap outside of my comfort zone into self-advocacy. Simply put, self-advocacy means representing oneself. I didn’t truly understand the depths of what this entailed until I was forced into it and now this definition hardly seems powerful enough to me.
Being a self-advocate goes far beyond representing yourself. It requires self-awareness and confidence but also compassion, dignity and grace, being strong yet vulnerable, and many times, not playing by the rules. When you have strong self-advocacy skills you have more control and are empowered to make decisions that are best for you. Self-advocacy can look different for everyone and I continue to learn as I go.
There are a few things that I know to be tried and true. I have broken them down into four points:
You know your body best.
Our lives are bigger than our disabilities and we should be able to make the life decisions we want, without judgment. Healthcare professionals may know your condition better, but they don’t know your experience with it; you are the expert in your experience. The more you share your story, the easier it will become to move past it, learn from it and speak from a place of knowledge rather than just emotions. When we can communicate clearly our words have more power and others start to take notice and respect what we have to say.
Approach every situation with respect, an open mind, and a gentle voice. Work on strengthening not only your communication skills but also actively listening. Go into every meeting and appointment as prepared as possible - bring a written list of your questions and medications, ask if you can record the conversation, or have someone from your support system on speaker phone. I have also found it helpful to do some research on my own and learn to speak the language. Medical literacy can be complicated and overwhelming so I suggest writing down your doctor’s terminology surrounding your condition and use it as often as possible. Don’t be afraid to ask them to repeat themselves so you can take notes and review them before your next appointment. You’ll be prepared and confident to pick up where you left off.
Be open to help
This may seem a bit redundant but the reality is that self-advocacy doesn’t always work on its own. But even failing teaches us how to improve. Find people you trust who you can rely on for support. Your support system, whether it be friends, family, neighbors, or co-workers all play an important role in your recovery journey. Making connections in your community will strengthen your voice. Maybe someone from your support system can attend an appointment with you for mental or emotional support? Don’t be afraid to name-drop or educate your audience on the complex demands of your brain injury or disability.
Take a time-out
It’s so easy to get lost in the fight. When I started writing this article I received a phone call I had been waiting eight months for, during which I had to become a self-advocate. I could feel myself getting tense and frustrated from the other person's lack of compassion. The call was unplanned and so I went into it unprepared without my notes and questions. I ended up ending the conversation early to avoid an undesirable outcome.
If you find yourself going in circles trying to resolve a particular issue, ask yourself what is your desired outcome? If you can’t find your own answer to this, it may be time to take a step back and re-evaluate your approach. I have found it both helpful and necessary to take a mental health break in-between appointments to clear my mind, make notes on what has transpired, and gain clarity to move forward. My personal break of choice is a walk in the woods but stretching, meditation or breathing exercises can be helpful as well. When you get tired, take a break but don’t quit!
Click the photo below to learn more about Rhian Jansen.