Seize the Day with Sarah

Seizures saved my life. I feel like I’m being a little too nice to the condition, disease, or what I call the jerk known as epilepsy when I say that. But the seizures saved me because they helped doctors find the brain tumor.

The funny thing is, when I use words like seizures and tumor, I think about running.

I was doing the morning show television news routine in 2008 when I started feeling funny. I would read a story on the air and feel out of it. Not the tired mom who woke up at 2 am kind of out of it… but total brain fart out of it. It was happening to me every day, several times a day. I would wait for commercial breaks to ask my co-anchor if I made sense. She said yes so I moved on, took a deep breath and wished Madison, Wisconsin good morning from the anchor desk like nothing happened. I played the happy mom for viewers. I was a good actress.

This was in the summer of 2008, 12 years ago. My focus at the time was my babies, then only one and two years old. And I loved running. In the cold, rain, heat, in races, alone, long, short, whatever I could get to clear my mind. It was my therapy and still is. In the fall of 2008, doctors finally diagnosed me with epilepsy, more minor seizures known as “simple partial.” I could still function pretty well – drive and read a teleprompter. However, doctors were puzzled because they couldn’t figure out the cause for an otherwise healthy woman in her early 30’s. They asked me countless times if I was sure I didn’t hit my head. They also pulled me aside to say, “If you are doing any illegal drugs please let us know.” I can’t count how many times they asked me that one. I always wanted to say, “Yes, every illegal drug I can get my hands on between the four or five hours I sleep before the morning show where I pretend not to be high … and then watching my babies before putting them to bed and passing out.” But I just said no. To them and to drugs.

Fast forward two years. Exactly 10 years ago – July 2010 – I spent my first week on short term disability after doctors finally figured out why I had seizures. An MRI discovered a mass in my brain and doctors scheduled surgery. In the meantime, we tried countless medications to control seizures but nothing worked. I had to leave my morning news job with no clue what this invisible disability would take from me or the reality of the world for the disabled. I remember running hard that summer. I felt guilty that I couldn’t work but since a normal, good night’s sleep was important and I had some other, more dangerous seizures, the 2 am alarm had to stop going off.

Surgeons removed a mass from the left temporal lobe of my brain on September 20th. It had to be mailed to the Mayo Clinic where it was diagnosed as a very rare tumor that had to be watched carefully over the years. Removing the tumor didn’t stop the seizures but I had a better chance of surviving now that it was gone. Since I was younger and healthier than most who had this very rare tumor, I asked when I could run again.

Once doctors approved, I laced up. Running was – and still is – the one thing I can control. I was allowed to do a half marathon in 2011, but not yet 26.2. So I ran two half marathons in 2011 and got approval to train for a full in 2012, almost exactly two years after surgery.

My epilepsy has evolved quite a bit since. I went from simply being out of it during a seizure to standing still, sitting down, making no sense with my speech, acting upset and frustrated. And they are completely impossible to predict. Usually, I’m not running when a seizure hits but when that has happened, I’ve had family and friends either following me or running with me. If you see me running alone in Madison or Elmhurst, there is about a 90 percent chance I’m being followed. It’s not just some creepy guy, it’s more likely my dad in his car.

I remember running when I first moved from Madison to Elmhurst, IL in 2013, exactly seven years ago this summer. We lived only a mile from the prairie path, a true runner’s dream. While epilepsy had taken away my career dream, I was determined not to let it take everything. I had a chance to start over. Unfortunately, I lost my driver’s license in 2015 when my seizure diagnosis changed from simple to complex. Several jobs later, my doctor ordered me to stop. It was 2017, just after medication adjustments lead to a grand mal seizure at work, where I had to be whisked off in an ambulance. Nothing new.

Luckily, I was still allowed to run the Chicago Marathon that October. Since the seizures had become more high risk, I qualified for a guide, thanks to the athletes with disabilities program. The guide, a volunteer, flew in to Chicago from Canada and is now a close friend who I will never be able to thank enough for running with me. Not to mention other guides and countless friends I’ve made through the running club who make sure I’m never alone on that path, today included.

I need long Saturday runs out there with countless “good morning” greetings to remind myself there is still good in the world. Especially in 2020. This year, the Chicago marathon is around the same time as my 10 year brain surgery anniversary. I always privately imagined throwing a big party in the fall of 2020 to celebrate life. Crossing more than just a finish line for a race. Doctors told me if the tumor doesn’t come back in 10 years, it never will. While everyone expects the race to be cancelled soon due to the Corona Virus, I will still run 26.2 somewhere. I need another run to remember as I celebrate this milestone, even if it’s in a mask. I know I can survive as long as I am lacing up.

I started taking a hip hop class at the gym. It gets me out of bed on Tuesdays and Thursdays and is usually jam-packed with women of all ages and one tremendously brave guy from time to time. I would call it the highlight of my day but I get to FaceTime with the kids on Tuesdays and Thursdays too. I miss them so much it hurts. I recently rediscovered how therapeutic dance can be.

Hip hop takes me back to my life long love of dance, starting at the Academy and then practices and performances with the Oak Park River Forest high school dance team and Orchesis. The only difference is the OPRF coach Donna would never let us listen to Beyonce or even think about trying to move like her.  As far as Beyonce is concerned, “trying” is a critical word here.

The adult hip hop class is totally awesome, all choreographed and taught by the most beautiful, real, fun, talented woman who keeps us thinking, sweating and most importantly smiling for an hour. I have talked with her about my epilepsy, too, so I feel especially comfortable knowing she knows. I can breathe.

On Tuesday we danced to a song that includes high kicks. I didn’t realize how much I loved those kicks until I quit for 25 years and tried to see how high I could kick again at the age of 43. When I went back to class Thursday I could still feel the burn in my hamstrings. I am thinking I’ll do some kicks alone in the basement later today … or maybe I already did?

In the meantime, I’m still crazy obsessed with running. My goal this year, since the kids are now living with their dad back in Wisconsin, is to try some shorter races and see how fast I can run for three miles. I’m also determined to break my personal record at the Chicago marathon so I can run in Boston 2021.

Since my epilepsy is not controlled by medication and seizures are unpredictable, running alone is not an option, doctor’s orders. I have great running friends who help and Super Dad willing to follow me in the car.  Despite the burning high kick hamstrings, I asked Super Dad to follow me for an hour instead of 40 minutes when the forecast was 70 degrees and sunny.

I was in a zone thanks to the weather but also the countless butterflies in Elmhurst, IL that came out to celebrate spring on the Prairie Path. I chased them, tried hard to keep up with them, lost them and then found others to out-pace me.

The butterfly is a representation of life, endurance, change, and hope. Hope is the key for me since it can be so hard to understand why my life has been turned upside down as a mom. I look for a sign of hope every day and hope my friends and family – as well as the butterflies and hip hop dancers – know they make a difference.

Eight years ago today I had brain surgery to remove a mass, what turned out to be a tumor in my left temporal lobe. My fibrillary astrocytoma was small, slow growing and most importantly benign. I learned there is a high recurrence and therefore low survival rate in the first 10 years. Eight down, two to go. Quite the anniversary.

To celebrate, John took me out to dinner last night. We left the house right after the temperature fell and the rain started. When we returned home, the first thing I noticed was this apple on our counter, bite marks around the top in a perfect half circle, teeny apple crumbs spread out a few feet in each direction, the IPad almost knocked off the counter. I wasn’t scared but I knew something was up. Especially when the placemats, salt and pepper and my medication were all out of whack on the kitchen table. The kids aren’t home and I’m too OCD for that one.

It turns out a squirrel broke into the house while we were gone through the screen above the kitchen sink. I decided the squirrel is a “she” because I picture a mama squirrel desperate to feed her hungry family.

John thinks it’s the squirrel that’s been building up the courage to walk up to us like she owns the place. We laughed hard, searched the house for our new family pet and realized she was smart enough to leave the way she came out. She could have been a little more polite and cleaned up after herself but I forgive her. I cleaned the kitchen until my hands hurt this morning and it’s been on my mind all day. Not because I’m scared we’ll wake up to a squirrel in bed tonight. More because it’s a reminder of our lack of control in life.  It was a nice distraction from the stress and a good excuse to talk about the squirrels in my old Oak Park neighborhood. I swear they had a straight up gang in the 80’s.

I started out writing with the words “I’m so mad.” First of all, that is so boring. I wasn’t thinking about the squirrel which is much more interesting than my anger, but the two relate. John and I have been binge watching Mad Men (*spoiler alert*) on Netflix since my kids moved out last month. I find myself addicted, yet I get mad during every episode. Whether it’s sexism or alcoholism or divorce – it’s always the dirty Don Draper, the epitome of all these things, who I still somehow feel sorry for. Don’t get me wrong, I cannot and will not stop watching the show. I realized it’s teaching me what I really care about. It’s not the arrogant liar, it’s the one episode character who reminded me that I have work to do. One of Don’s countless mistresses is a young teacher whose brother interrupts their fun because he needs help. The brother’s character refers to episodes – seizures – causing him trouble. His epilepsy prevents him from keeping a job or being treated like he’s human. He is starting a new gig at the end of the episode, prepared to be fired before he even starts. The discrimination was ridiculous 50 years ago but sometimes we have to recognize there is still a lot of work to do.

For today at least, I decided to stop pretending to be “ok” and start writing. That forces me up a little farther on the “ok” meter. I chose this day because it’s one I can vividly remember going under and coming out of brain surgery knowing who I was, where I was and what I wanted out of life. Those things haven’t changed. Thank you to the doctors, family and friends who have stood by me and always will. And thank you to squirrel mama for reminding me to tear through some screens if I have to. A message that feels like a treasure from heaven on another September 20th.

It’s my third day home with Ethan who is recovering slowly from flu and pneumonia. Today, he slept until 10:30am. We are officially fever free and will celebrate this milestone tonight with more amoxicillin and ice cream. E man feels a little better except for the cough that makes him sound like a 75-year-old who has smoked 65 years. He may have to go back to the doctor if it doesn’t improve but that’s ok, we’re lucky to have doctors and medicine. And an Xbox.

I spent a good 5-10 minutes (20) this afternoon trying to link the Pandora app on my iPhone to the speaker, which makes me feel like a 75-year-old trying to keep up with technology. It’s like calculus in French (both of which I never even took). I’ve tried at least a few dozen times and while I try to be patient like I’m French, it won’t synch. I know what Bluetooth is and I go to “Settings” but then I realize I could be doing something else. Today, I was anxious to scratch “dishes” and “laundry” off my to do list, exciting right? So I just turned up the phone volume and rocked to 90’s hits.

All week, Ethan’s fifth grade friends have been dropping his homework off after school, so while we expected them at the door again, today’s delivery was a fabulous surprise. Ethan got homework PLUS a Green Bay Packers themed get well card signed by the entire 5^th grade. He wouldn’t take a picture with the card but it’s too cool and sweet not to announce; real, good-in-the-world evidence.

Now back to dishes and laundry.

 

Epilepsy has really done a number on me this month. I’m taking more medicine but still no seizure control. Nothing new but no less frustrating. My goal was to blog every day in November since it’s epilepsy awareness month. Playing a little catch-up today.

I ran 26.2 miles for the Epilepsy Foundation of Greater Chicago in October with my beautiful, wonderful guide Monica Lee. I cannot thank Monica enough for making me feel safe. Not to mention Monica is an awesome running partner and friend. I’ve never had trouble during a race and I was lucky to get through October 8th without a seizure. I could breathe during the Chicago marathon since Monica was there and knew what to do. These days if you see me running, there is a good chance a friend or family member is following me in a car or on a bike. I can’t and won’t run alone but I also can’t and won’t give it up. I need it.

I had something come out of my typically TMI mouth this week that I want to share. I respect those who do not want a condition like epilepsy – anything involving their physical or mental health – to define them. Some people don’t have to and no one should. At the same time, I let this condition define me many years ago when I chose to continue working in TV news, having seizures on the job. Now I’m choosing to let it be who I am and I’m grateful for your support. Click here to watch the PSA airing this month on the CBS affiliate in Chicago.

In November, I hope you see more purple, the color of our cause. I try to add purple year round to my phone case, a bracelet and my wallet, I’ve even added fingernails and (what’s left of) toe nails to the display. I often wonder, though, who knows what the purple stands for. Does anyone outside the family understand the condition? Even those close to me have trouble at times. Epilepsy sits on the sideline because it is mysterious and inconsistent. It should be, given that it comes from the brain, the most complicated part of the body. Then there’s the fact that the community is afraid of seizures and those diagnosed are often afraid to admit it. I don’t blame them.

I had a seizure in front of my son recently. I told him at bedtime that I was proud of how he handled himself and I reminded him I’m grateful it’s me, not him or his sister. I pray every day for those who have to fight this for their kids. He responded by saying he wouldn’t go to school if it was him. The honesty was sweet but it also broke my heart. There are children who have epilepsy, dealing with medication, side effects and the fear that they might have a seizure every single day.

So it was especially touching when my son, who has witnessed and helped me so much over the years, saw the Green Bay Packers quarterback Brett Hundley talking about his sister’s battle with epilepsy before a recent NFL game. Yes, we are Packers fans living in Bears country, so imagine my football boy relating to the Packers QB! Click here to watch the Brett Hundley interview. Listening to Brett talk about his experience made my son – made all of us – feel less alone. My kids are brave, strong and proud… but I know they would do anything to have me free again and I hope they’ll join us in the fight to make it possible.

Please click here and consider a donation to the Epilepsy Foundation of Greater Chicago. The non-profit serves kids and adults, saves lives, and helps people like me survive.

I had a brain tumor removed on September 20, 2010. Every year on this date I try to remember going into the surgery and the recovery but it’s a blur. What I do remember clearly is fear. What is this mass in my brain? Am I going to live? Will my kids remember me? Not questions I asked or admitted I was asking myself, but they hovered like the medical staff getting ready to cut me open.

In a way, epilepsy saved me. When doctors searched for the “why,” they finally found the tumor. Today, while epilepsy continues to chase me, I have answers to those questions. It was a fibrillary astrocytoma and I lived. My kids not only remember me, I figured out how to be a single mom of two through it all.

This week, I have the annual MRI to make sure the tumor didn’t grow legs. Back in 2010, I was warned there was a good chance of recurrence. And, if it came back, there’s a fatally rate of 90% in the first 10 years. “But don’t worry,” the surgeon said, “the tumor is so rare … not to mention in a young, healthy woman.” I am getting ready to throw a serious party in 2020.

I recently become the poster child for the “you never know” element of epilepsy, having a seizure during my Saturday morning run. It happened at mile 19.5 out of 20 during athletic rush hour on the running path. I only remember thinking, “I’m almost done! I’m killing this!” then wondering why I was walking. Based on my history, running doesn’t cause seizures, but it doesn’t stop them either. Adrenaline seems to, though, so the plan is to race faster than ever.

I am committed to sharing these experiences for those who suffer but cannot speak, learn, play, write, work… or run. Please support the Epilepsy Foundation of Greater Chicago as we get ready to run 26.2 on October 8th. Click here to donate and learn more.