All’s Almost Fair

I named my blog Seize the Day because I was diagnosed with seizures, with epilepsy, in 2008. This is a big year for me, I have a 40th birthday just around the corner and it’s been five years since I had brain surgery to remove the tumor that was causing those seizures. Sadly, pathetically really, it took two years for the experts to find the tumor. It always cracked me up that my surgeon picked what would have been my 7 year wedding anniversary in September of 2010 to operate, but my would-have-been husband had left me six months after my diagnosis, so I had a new anniversary to celebrate. Everything happens for a reason and I found the love of my life since.

This week I learned that my MRI, five years after surgery, shows no signs of tumor recurrence. I stayed cool for two days, between the torture of the MRI (is my tumor setting up shop again?) and the “I don’t see anything that concerns me” good news from my neurologist. It’s like when you held your breath too long in the pool as a kid. I don’t think he, or anyone, gets what those words mean to me. And then after the news, the relief of the year, I can’t stop crying. It happens every year at this time. I somehow move on to freaking out over what will happen with future seizures, future financial disasters, future love loss. I was hit so hard, so heinously, it’s hard to wake up in the morning and believe I won’t be hit harder. All’s fair in love and war with the brain? Not so much. Welcome to the world of epilepsy trying to break up with a brain tumor. It left a hole, literally.

When the strange seizure activity started in ’08, I quickly became involved in the community that advocates for those who need support, fundraising and awareness for the cause. I was working in TV news at the time and having the seizure activity right there for everyone to see. I picked myself up, literally, and kept anchoring and reporting the news, never once thinking that I might always just “have” it. Never thinking that I would need support myself or understand it like I do today. I have never been more grateful or excited to be part of the cause, the support community and the search for a cure.

Today, I am on the Epilepsy Foundation of Greater Chicago board http://www.epilepsychicago.org/ and the same week I got my MRI test and results, John and I headed to Camp Blackhawk for dinner to hang out with the kids who attend and watch their talent show. I managed not to cry, feeling beyond overwhelmed by who they are and what they can do, knowing how they must feel around others, outside of this camp, when they can’t do things due to their condition. I’ve been there. I still am.

I am certain, based on the hair and makeup job when I was handed the diagnosis, my drive to stay on camera and pay the mortgage and bills, that those who followed my story might expect to hear me say “I beat epilepsy,” or say things are “great!” But I feel, as a former spokesperson and a board member that it is my job to point out that it’s not how epilepsy works. We know we all come across perfect on our phones and social media pages, but no doctor or expert ever told me the journey was going to end when it started. 1 in 26 people are diagnosed in their lifetime and very few are controlled with medication, not to mention those operated on. I’m starting a new medication this week, one of probably two dozen attempts in seven years.

I’ll be 40 this year and running my 4th marathon for charity. This can also give a false impression of someone who is cured. I run for charities because I know how important they have been to the people I told news stories about over the years and how important they are to me. First, I ran for the Brain Tumor Association and these days for Imerman Angels, a one-on-one cancer support charity. Cancer touches us all and I know how close I came and how lucky I am to be one of the brain tumor survivors who heard the word benign. It keeps me up at night. I run and think about it. And I run because before we figured out I had a tumor, I had a dozen seizures a day and if I ran, I had fewer. Today I run because it will help me accept that this is part of me. It’s a part of my life that I need to include in the plan, like my daughter and my son, my parents, my John, my running shoes to lace up for the race. Please help me give back, pay it forward, if you can: Sarah Carlson Imerman Angels

I thought TV news would be a part of me forever, too. I won’t lie, I miss it terribly. I don’t miss being on camera and having people know my name, I miss being part of a business I know and being one of the veterans in the room.

The same day I listened to the sound of an MRI, which is like a construction site in my head, I also got to re-live my TV news days at work (I work for a charity part of the time) where I met the ABC 7 TV news crew. Coincidentally, the videographer (camera man) was the same person who shot a story on me nearly a year and a half ago:

http://abc7chicago.com/archive/9509378/

I was certainly in the process of “moving forward” when I met the wonderful reporter who told my story, a woman who overcame enormous odds and succeeded in the TV news market I still only dream about working in myself. But I will only feel I truly overcame the odds myself when the subject of my personal life and health doesn’t take up more of my time and energy than my professional skill set. I just wish someone would take advantage of what has gone unused since I became the subject of my own news story.

All’s not fair yet but I know it will be. Maybe when I’m 40.