Hope: The sequel

by contributing blogger Katrina McCarty

Continued from “Support patients emotionally to foster full recovery aka ‘Hope: the Original’”

It’s been eleven years since my surgery for an unruptured brain aneurysm. The scars on my head (and the emotional scars in my head) are reminders of my path — bumpy and at times painful. The cliché says that which doesn’t kill you makes you stronger. I’m lucky and grateful that the aneurysm didn’t kill me or leave me with chronic health issues. But, I’ve never felt strong because of it, more often if I think too long I’m outright scared. This year, I was gifted with new perspective and a new landscape – from which I’m trying to pave a new, stronger, and hopeful path.

One in 50 people have an unruptured brain aneurysm (an estimated 6 million people in the U.S.). Every 18 minutes a brain aneurysm ruptures without warning, and about 40% of those are fatal[1]. Statistically we all know someone who has one. Doctors and hospitals treat aneurysm patients often. In fact, the surgeon I saw told me to relax because he saw such patients every day and had performed thousands of aneurysm surgeries. Great, but it was a first for me. The surgeon wanted to open up my head and let the air hit my brain. Air isn’t supposed to hit your brain.

I spent hours in online communities and support groups for people with aneursyms. At first, trying to learn more about the diagnosis and surgery. More recently, trying to encourage and be a positive outcome for others. It’s easier to share online when I’m anonymous and I focus mostly on facts not feelings. Every year I run a 5k to raise money for a national foundation to support education, research and awareness of brain aneurysms. It’s sobering to see so many people and families that have been impacted, many by loss. It’s a way to pay it forward. I usually go alone and I never talk to anyone. I don’t want anyone to see that I still get scared.

A new perspective. Recently, a friend connected me with her friend who had an aneurysm and was scheduled for surgery. Talking with this friend was profound. It was very emotional though I don’t know if she knew I felt so. I saw similarity in our path (incidental finding, how the news was shared by doctors, decision to clip). I saw divergence in our reactions (she seemed calm and rational where I had been paralyzed by fear and anxiety). We talked about our diagnosis, our experience with the healthcare system, and the nuts and bolts of recovering from brain surgery. She thanked me for sharing yet it was she who gave me a gift. She gave me perspective because now I know someone else. That is powerful, I feel stronger because I’m not alone.

A new landscape. I changed jobs this year. I joined an incredible community of smart, passionate, caring people working to improve health and healthcare for children. I can’t imagine a better mission. Until I got here, I took my healthcare (doctors and systems) at face value. I know my care and the system are imperfect but didn’t have the lens through which to consider how they might be improved. From the work generally, and from an incredibly special person in particular, I’ve discovered the landscapes of quality improvement and of patient and family engagement. I shared some of my story with someone who gave me the gift of listening, hearing, and caring together with knowledge and tools to make a difference in my own path and in that of others. I found words to share how the gaping hole in my care during my health crisis was my mental health — how the fallout has made my path bumpy and at times still painful. I found words to share that how medical information is shared and how care is provided has profound impacts short and long-term for patients, families, doctors and the relationships between and among them. I found vehicles for how I could become involved with care to make a difference. This is powerful, I feel stronger because I have a voice.

I’m taking the perspective and the landscape and starting to pave a new path. I’m embracing the bumps. I’m not sure yet where my new path will take me but I know it will make me stronger.

[1] Source http://www.bafound.org/Statistics_and_Facts



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