This journey through my recovery has been painful, draining and heartbreaking to say the least. With progress always comes a setback or a few and it is deeply disheartening. Even with such incredible support I have received from friends and family, it is still so easy to feel alone. This comes back to this injury being essentially unseen to the eye which leads to so much misunderstanding and unfortunately, judgment.
Brain injury has been referred to as the silent epidemic. This is due to lack of public recognition of the complexity despite a staggering 5.3 million Americans alone living with disabilities secondary to brain injury. The effects are often downplayed or even unrecognized and untreated in a lot of cases, so the actual number is likely much greater than that.
I had experienced this stigma and downplaying of concussions personally in the medical field. I realize now that I was part of the problem. In clinicals I would see a patient who sustained a concussion with my attending and the patient was told to just rest for a week and refrain from use of electronics and send them on their way. Essentially, they were told to sleep it off. I would see a patient in the emergency department with a concussion and advise them to follow up with their primary care physician but I didn’t actually stress the importance of follow up and the possible repercussions. And really, I did know the possibility of these repercussions but not to the extreme that I am experiencing them now.
I didn’t truly know just how complex brain injury was until I experienced it myself.
I had been thinking about starting a blog on and off for some time but the task just seemed too daunting – I can’t read for very long and can’t stare at the computer screen for longer than ten to fifteen minutes every several hours without producing debilitating symptoms. Each day is so energy draining as it is. How could I possibly accomplish this and see it through?
I have been very reluctant to share my story and haven’t spoken openly about my injury and the struggles that followed and continue today. It’s extremely difficult to be completely vulnerable and express what I’ve endured for a few different reasons. These are some very dark days to reveal. With the injury comes a great deal of guilt and shame because it seems like you are trying so hard and doing everything you’re told but still just cannot progress like you want to. This recovery somehow feels like a moral or personal failing.
I don’t want anyone to feel bad for me and really just attempting to fully explain it to others is draining in itself. Only a few close people in my life know the depths of my recovery and what I have experienced. Keeping my story and journey private is due to several things – not wanting to worry others or let people down, not wanting others to feel bad for me, feeling shame that I am still going through this recovery. Sharing my story openly is a very uncomfortable feeling but the end goal of helping at least one person in the process is worth it.
I paint sometimes to get lost in something and to express how I’m feeling in a way words just can’t. As it is nearly impossible to truly put into words what every day feels like in this recovery, I painted this as a means of this expression.
Among many other symptoms I experience on a daily basis, brain fog is one of the big ones. This is one the most common symptoms of concussion. You feel like you are slowed down, in a fog, in a haze, not yourself.
One day I sat, frustrated, sad, anxious and thought maybe I should try to release this through a painting. And bit by bit, my painting came together…an outpouring of all of these feelings.
After painting this, I realized that I should just do it – share my writing and start this blog. I have struggled with the feeling like I am not contributing much to this world right now. Shortly after I painted this, it hit me – I should use my writing to contribute and hopefully help at least one other person no matter the hurdles in the process. I looked at my finished painting and it was raw and deep, a depiction of my recovery.
And so the name of my blog was inspired by my painting. Lift the Fog – that is what I would call it.
This is a message of lifting the fog – of traumatic brain injury misconceptions, concussion stigma, but also providing some clarity for those struggling in silence, who feel alone.
My hope is that my experience can lift the fog and cultivate the compassion and awareness that is needed to aid in this silent epidemic and bring hope to those suffering.
This is my first step to being part of the solution. Whether you are living with a brain injury or are the loved one of someone who is, may you find ways to better support, educate and spread awareness and better your life in the process.
Feel free to share in the comments below or connect with me here.