Author: sarahvcarlson76

In three weeks, I’m running the Chicago Marathon again for the Epilepsy Foundation of Greater Chicago. Please help by donating whatever you can today. 10 dollars makes a huge difference!

Please CLICK HERE to donate

3.4 million people suffer from epilepsy in the U.S. alone, including a half million children, and the number is increasing. One third of those diagnosed, myself included, do not have a medication or treatment that works. We are forced to manage a life where consciousness is a gift. The Epilepsy Foundation steps in, every time, when that is lost.

Epilepsy impacts more people than autism spectrum disorder, Cerebral Palsy, MS and Parkinson’s Disease combined. It’s hard to understand because it is often invisible. I talk about epilepsy to make it more visible. And I run for the cause because I still can.

I also run for Madeleine who loves to run cross country for Sandburg Middle School.

And Ethan who only loves to run with a football. 

Epilepsy has been after me for 10 years. It manages to win a lot of battles but I will not let it win the war. Distance runners will often say “it’s all mental,” to get through 26.2 miles. I couldn’t agree more.

In order to train, running several times a week, I have friends who drive to my house at 5:30am. I can’t drive and I can’t run alone, so Nancy, Jen, and Rachael show up at my door. My parents and John also follow on a bike, sometimes even in a car, just in case my brain misfires and I need a few minutes to remember where I am. Who I am.

Then there are my friends with the Elmhurst Running Club. We follow a training routine that includes long runs on Saturday mornings. With three weeks to go, we are headed for another 20 miler tomorrow at 6am. The ERC allows me to feel like I am part of something I don’t have to be afraid of losing. This group has helped me through a few seizures, too. Never judging, though, and never leaving me behind.

I need and appreciate every prayer and every donation. Thank you and wish me luck on October 8th!

 

 

 

 

 

The little things give me hope. After a rough week (decade) or so, I decided to join Ethan for his dental check-up. Not because I’m needed there, but I don’t want my lack of driver’s license to mean lack of parenting. Doctor and dentist appointments are good examples.

About a block before reaching Dr. Bacon’s office, we caught a red light at one of the busiest intersections in Elmhurst. Our dog lover radar went off quickly when my Mom and I spotted a little, four-legged friend walking casually down York. It was rush hour and the puppy was a few feet from traffic, no leash. Just as quickly, we spotted the owner, with a second little dog, and even less of an ability to see the one that took off. I rolled down the window and asked if she needed help and the sweet older woman was in such a state of shock that she couldn’t answer.

I decided to jump out of the car and chase the dog. I quickly learned that Sissie, the one on the loose, wasn’t going to fall for my pretend treat. I took my chances and grabbed her, returned to the owner and helped put the collar and leash back on. We even adjusted the collar a bit while Sissie was still in my arms, somehow perfectly comfortable. To be clear, I do not think my Sissie incident makes me a hero. It’s more of a thank you. If it hadn’t been for Sissie, I wouldn’t have found anything but seizures to think about. Today it’s about Sissie. And the Segway.

I had to Google “Segway” because the term Segway is actually is actually a trademark: it refers to a motorized, two-wheel personal vehicle. (Thank you, Merriam Webster online). Just minutes after the dog rescue, we learned my kids’ dentist not only owns a Segway, he rides it around his dental office. How cool right? My son, who told me he “hated going” to the dentist on our way there, couldn’t stop talking about the awesome experience having a dentist who rode a Segway and fist bumped after his check-up. This all happened (dental cleaning included) within 30 minutes but it was a big deal. Ethan’s smile lit up the room, not just because of where we were.

Then, while I wrote about the Sissie and Segway in my private journal, the song “‘Til the Calm Comes” played on my random shuffle. I downloaded it a few weeks ago after watching an awesome, moving story about the lead of the Hamilton musical here in Chicago, Miguel Cervantes, who recently learned that his baby girl has epilepsy. He wrote and sang this for the cause. I figured the song and the timing of it on my playlist were a sign. A great segue, one could say, back into my purpose on this crazy planet. ‘Til the Calm Comes for sure. Click here to watch the story

 

 

 

 

 

Today I feel like the poor birds flying into my windows and injuring themselves. I know they don’t deserve to be confused and hurt but it just keeps happening. I try to “hang in there” and “know this is all happening for a  reason” and I pray but here is what I’m really thinking and feeling.

I feel guilty that I don’t find the time or remember to say thank you as much as I want to.  My misfiring brain is making it hard for me to focus long enough to write 15 thank you notes. Yesterday I only finished one. I would spend all day asking for help and writing thank you notes (and running) if I could. A blog like this used to take 20 minutes. Now it takes forever and I don’t like my writing.

I feel guilty that I blogged about how I was in the hospital last month then did not write an update. The doctor learned some things, not as much as we hoped but it wasn’t a complete loss. My epilepsy continues to change and evolve.

Epilepsy is the reason I don’t feel like myself and it’s the reason I need to run. It is hard to struggle inside but look the same, which I do (just older, see picture). My doctor gave me permission to run as long as I’m not alone. It’s important therapy but I worry about what people think. I understand that it’s hard to understand how I can be fighting a serious condition and still run. I thank God every day that I have the support I need to make it happen.

I feel guilty that the people who help and love me the most are hurt by my epilepsy as much as I am. I have been pretending to be OK since I was diagnosed in 2008 but it hasn’t helped. Medication has always felt worse than seizures. I feel guilty that my family has to struggle with this but I thank God that I have epilepsy and they don’t.

I want to write more but it’s getting harder to do. Thank you for your love, prayers, support and patience.

I’m closing in on day five in the hospital, undergoing testing to learn more about my epilepsy. We’re all praying for a seizure to happen. No pressure when I’m the patient who can’t seize when everyone wants me to. As if having epilepsy isn’t enough, trying to understand where it’s coming from is torture.

The bright side is the view I get of the Chicago city skyline. Sunrise, sunset, storms and traffic are stunning. The view is a great preview of the fall marathon – motivation for me to get answers about my head so I can keep moving my feet. I’m surrounded by a hospital staff that makes me appreciate those in the health care industry even more. What they see and do for patients every day is beyond the EEG and IV.

I have had epilepsy nine years. In the race to show the seizures who’s boss, I am more committed than ever to beating it, being more honest about it and literally running for it – never from it. I feel a responsibility to spread the word. Also, selfishly, writing is good therapy when I have to go a week without lacing up.

While I am a fan of social media, I also feel it’s ruining our ability to keep in touch. We catch each other’s bright spots because no one really posts the dark ones. Or the real dark ones. We check in online and assume all our old friends, neighbors and loved ones are “great.” I’m guilty of it and I hate it. So here’s my before and after, July 4th to July 14th:

 

1 in 26 people will develop epilepsy in their lifetime but there are dozens of different kinds of seizures, not to mention one-third of patients can’t control it. I’m guessing I’ve written that before a few (hundred) times but I won’t stop until the cause gets more help, both awareness and funds, to make sure reasonable progress is made. Please click here to learn more and please donate.

Seizures took a lot away from me but the running shoes and race bibs are mine. Running, like this hospital stay, remind me to appreciate the small things in life. It’s lead me to close friends, a little renewed confidence and real emotional peace. I run for those who have helped me survive the journey as well as those whose seizures have stolen the journey they deserve.

I am thankful for many things but today it’s the simple things. Pediatricians who see sick kids quickly and prescribe medicine. Pharmacies who get it done and grandparents who rush around with me. My daughter was diagnosed with pneumonia, of all things, and I predict will feel much better by the holiday. Better enough, at least, to eat.

I am tremendously thankful for my children and their health, my family, friends, and the roof over my head. The simple things. I try to remind myself of this every day.

I am also really thankful and proud of the work I was asked to do for Epilepsy Awareness Month in November. I had the honor of speaking on a panel and on a radio show and I am appearing in that public service announcement I talked about, produced by CBS Chicago. Thank you for all the wonderful feedback and most importantly, your support.

CBS 2 Chicago Epilepsy Awareness

 

I have never answered “yes” faster than I did the request to be part of a local public service announcement for epilepsy. At least a private, cheering “yes!” One of Chicago’s finest crews – CBS – honored me with the role for Epilepsy Awareness Month this November thanks to contacts at the Epilepsy Foundation. Before I knew it I was chatting with the awesome hair and makeup artist and soon sitting on a stool in front of a green screen and camera. Like riding a bike for a former newscaster. I will share it as soon as it’s ready.

I had a great experience meeting really hard-working, energetic, sincere people. I even told them a part of me hoped I would have a seizure during my shoot there, just so they could see why I wanted to spread the word. I’m not sure they believed I really hoped for one, but I never did anyway. I am proud that I agreed to introduce myself in this PSA as someone living with epilepsy – sharing the video of this on air seizure with viewers and with you. The Seizure

For the first time in almost six years, I can say I took control of this. I want to share it so it can help someone recently diagnosed or even someone just wondering what it looks like. I have had thousands, countless episodes, with no control. Only others who have them can understand the terrifying feeling. In my case it’s an inability to speak when a voice in the back of my brain is screaming “No! I’m fine! Just give me a minute to come back.” This is particularly hard for someone who talks too much. The seizure I’m sharing has been viewed more than a half million times. This one prefaced every job interview I have had since I looked to get out of news. This one came after countless on air seizures that I successfully read right through (later asking a co-anchor “Did I just make sense?”) This one was so traumatic, some of the people closest to me in life have never watched.

I certainly have to take responsibility, having stayed in broadcast news with an epilepsy diagnosis. I found a positive side to the misfiring brain journey, using the TV role to ask for community support for the 1 in 26. I served on the board for the Epilepsy Foundation in Madison, WI and worked with Lily’s Fund and CURE to spread the word. I am now doing the same in Chicago where I had a record marathon raising funds for the Epilepsy Foundation here. EFGC  I am already signed up for the 2017 team.

The truth is, I am tired of this community being an afterthought in the health care and fundraising worlds. Most of us can agree that the face of the condition itself, with dozens of different kids of seizures, doesn’t help. Most have unfair expectations of those of use who don’t necessarily look like anything is wrong. Everything from schools to landlords to employers to courts.

My current lack of driver’s license, much less temporary than expected, is due to my condition. I lost it between my diagnosis in 2008 and surgery in 2010 due to tonic clonic, formerly known as “grand mal” seizures. Doctors found a brain tumor and removed it in 2010, which improved medical problems and solved the license problem. Five years later, last winter, I had a surprising setback that stripped me of the ability to drive again. I can certainly hope for a license in the future but I have to make plans to function otherwise. Nothing is more heart breaking or disappointing in my effort than being told I need to “live with it.” That my driving issue is “not insurmountable” as it relates to being a single mom. It would be foolish for me to grab a set of keys and drive, so I won’t. I pray for change but can’t force a brain to stop misfiring. Seizures are certainly one of those things we can’t always fight. I refuse to allow any lack of understanding or awareness to be added to the list.

The painful hurdles in life make us stronger, so my new goal is to become a body builder. While I am sore from daily curve balls, no one is stronger than die-hard Cubs fans. It is surreal to say they are playing in the World Series for the first time in 71 years. Not that anyone noticed.

I love the Cubs, but I certainly never lost sleep over their ups and downs since I entered the picture nearly 41 years ago. Until now. It’s a great distraction. I know my family members in heaven are partying hard. Great-uncle Emil was part of the chair he sat in where he and Grandpa Frank made the Cubs a central part of their bachelor pad background. Uncle Jay listened to every game with the sound off on the TV. His preferred radio announcer and a chewing tobacco tin were regulars. The memory hasn’t faded a bit. Everyone agrees while these guys would roll their eyes at the current price of tickets, they would love the Cubs at bat.

 

I was born and raised in Oak Park, the first suburb west of Chicago. To city natives, if I say I’m “from” Chicago I offend… but for most of us, it’s just easier and cool. I have countless childhood and teenage memories of being at Wrigley Field. When I was little, it felt like a religious service when I went to a game with my dad and a friend. I also got to march on Wrigley with my Oak Park softball team in the summer, when I was young enough to be a ballerina who also swung a bat. As a teenager I’ll admit seeing very few pitches thanks to some cute boy. Going back as a grown up was a great combination of Chi-town religion and relationships.

 

I left home base after high school, sinking into the cheese for almost 20 years, starting with school in Wisconsin. The Badgers were an obvious choice as far as sports loyalties go, and I feared death threats wearing anything but green and gold as a local newscaster. But I never lost my loyalty to the Cubs. There’s just something about this team.

In the meantime, I wonder where my kids, now 9 and 11, will say they grew up.  I want them to love home base like the rest of us. Born in Wisconsin, they have lived with me in Chicago since they were 5 and 7. Moms are told that babies grow up fast but the warnings don’t prepare us for the reality.

My little guy has spent almost half his life here. Assuming I blink and my kids are in college, will they say they are from Chicago? This is not a competition, I swear. I love Madison, Wisconsin like all Badgers do, but I’d get a very cheesy stare down if I said I grew up there.

I have watched hundreds of friends and strangers hugging and crying and drinking and jumping and screaming and waving their flags when the Cubs take home a “W.” We all need a home base to run to whether we win or lose.

Go Cubs Go.

Those closest to me know I started getting nervous the day before I ran a race I cared way too much about to skip. The 2016 Chicago Marathon landed on another absolutely perfect, gorgeous fall day. The day before was just as gorgeous in every way… except for in my brain.

I am in shock more than I am proud of my finishing time. I know I trained for it physically but I also know I have been through more than I expected in the epilepsy department to continue to aim for my BQ. (Boston Qualifying time) Somehow, this year it motivated me even more to train  hard and race strong, given the team I was running for, the Epilepsy Foundation of Greater Chicago. Please click here to read and donate to the Epilepsy Foundation. I am still determined to reach my fundraising goal and THANK YOU to all those who donated. Every dollar counts. 

The truth is, I shouldn’t be running alone. Not after a seizure filled day. When I have several in a week, that’s a bad week. Several in one day is rare and not cool mentally or physically for the day before a marathon. I reached out to my Elmhurst Running Club friends to share my concern and was seriously touched by the quick and helpful response. The same friend who helped me during training, Ellen, suggested that I write about my health condition and medical instructions on something attached to my shirt, near my bib, so I wouldn’t have to face DQ. I admit I asked what “DQ” meant when I saw it, natural in my state of eating everything in sight. You can see the little note below my bib number in the picture where I’m high-fiving family. The note bounced on my hips for 26.2, somehow serving as a stress reliever. It was especially fun to show off when Ellen found me and ran with me for a while on the course.

This marathon thing left my parents, boyfriend John and “cousin” Roger almost as tired as the runners, waking up at 4am and spending the day on their feet. They had awesome new shirts made by friends at Viking Awards. These “Marathon Chasers” managed to track, spot and cheer for me three times! The Tarzon and Podlasek crew also deserve a special kind of medal for having three little ones down there. Knowing that loved ones wait for you at the finish line makes a crazy difference to the runners whose feet feel like they’re sinking into the pavement. Knowing you’re needed by the loved ones who can’t be there is even more inspiring.

 

Shortly after I was convinced I left a big toe on Michigan Avenue, I crossed the finish line at 3:43:40. My BQ time is 3:45:00. Rumor has it that Boston race officials may have to change the qualifying times because so many runners want to be there, so who knows what will happen come spring of 2018. Somehow it doesn’t matter to me. While this condition may beat me up, I will not let it beat me. Not on a race course, not anywhere else.

 

I wanted to run the 2016 race for 26 people who have epilepsy. I didn’t get nearly enough names, but I found a way to focus on the cause. Then there’s the last stretch – at least seven miles – where I swear someone is screaming “Who let you do this?” I always save motivating names and thoughts for this part, focused on one at a time, one mile at a time. This year, my ancient Garmin watch chose marathon morning for a glitch so I found myself wondering how far I had to go when I landed on Michigan Avenue. Afraid to have no plan for my mind, I quickly realized my mind is the last thing that gets a plan. I never would have predicted this would crack me up… and motivate me to move.

Last year, I trained until the race was six weeks away. I had to withdraw because of my health. I know I could have missed this one for the same reason, but I took myself from the fear of DQ to BQ. Walking backwards down the stairs never felt so good.

Yesterday I was inspired by a story I caught on Facebook about two guys who started a new company making socks and helping the homeless. It’s a must watch. Bombas Video.

I had trouble sleeping last night, maybe because of the race in 5 days and 18 hours (not that I’m counting), or maybe because of the giant skin abrasion on my neck (new nickname “hickey”). Or maybe, just maybe, it’s feeling bullied as a grown woman with enough problems to make Trump and Clinton look like they have it easy.

When I remembered the video on the dudes who are in business to make a difference, I started to doze.

Bees work together. That is the concept behind the company that gives back. For every pair of socks sold, they donate a pair to the homeless. I never knew that socks are the hardest to come by at homeless shelters because they can’t accept used socks. And they are critical to those who don’t drive but rather walk to their next meal. Working together to help each other is such a simple goal but one we lose sight of.

Despite not falling asleep until 11pm, I got up at 5:10am to go on a run with my girls. This 4 miler will be my longest run of the week before the big 26.2. My right calf muscle has been a bit of a jerk lately and it started feeling funky again today. I thought maybe I’m just paying more attention. Regardless, it hurt, so we walked a little and I am determined to roll this leg until the roller breaks.

Fast forward to late morning. I spent hours on the phone, as always. During that time, I spotted a giant bee inside my house. Of all days, right? I thought of an old friend – college roommate – who would have worked to get it back outside alive. But I couldn’t remember her doing so with bees (just spiders) and I couldn’t think of a way to make it happen. This was a big bee, confidently resting at the top of a tall window frame, near the thick curtains. It didn’t move around and I had to wait until I was off the phone to get a closer look. I had this nagging guilt over my goal of killing it, especially after the sock story.

I actually gave Bumbles a chance, thinking maybe it will die a natural death and I’ll sleep really well tonight. It didn’t move, I even forgot about it for a while, then finally took off my shoes, grabbed a wad of paper towels too big for my hands and headed right for the chair I needed to stand on to commit murder.

After gently pulling back the curtain, Buzzer moved a little but didn’t fly away. I felt an adrenaline rush, moved in slowly toward my target with confidence, smashed, then quickly looked at the paper towel. Much to my dismay, it was empty. My friend hit the floor, trying to figure out how to fly. My jump down to finish the job was all about karma. I chose the ballet jump, on the right leg, not thinking of my calf. I suppose a good thing that I got mad because I smashed a little harder. I was swearing about my leg and blaming my new friend.

I asked calmly while flushing, “Why? I just spread the word that you were good!” Then it hit me that I had work to do. Figure out how to really apply the help others mantra. Not with bees, clearly, but I need to be sweeter to those who are much less than that to me… and I need to be happy to be alive. And while I feel a little guilty about it, I will add more honey to my tea.

Happy Monday.

I spotted a Bob Marley quote that defines me. So much so that I thought about a tattoo:  “You never know how strong you are until being strong is your only choice.” Amen.

I write a lot about the obstacles in my life with the goal of finding a way to understand them. Writing is really helpful and I figure if I help one other person in the process, even better. I still complain to those close to me and privately wish horrible things on those who hurt me – but I ask for forgiveness from the big man upstairs and move on. Plus, it has never been more clear that it’s for a reason, whether predictable or out of left field.

Speaking of left field, I am pretty sure another creepy guy chased me on the running path. I have to say pretty sure because I sprinted and didn’t ask him his intentions. I just know that when I went to pass, he changed from a slow walking stride to my running pace (8:30 turned 7:00 in this case). Yet since that morning last week I have run more and loved it more. I have countless crazy, difficult chapters in my life that somehow I worry less about when I can put one foot in front of the other.

I reported the creepy, high guy to local police as well as to the running club. This is the group, like family, that stood by me when I had a seizure at mile 4 out of 20 during marathon training. They spread the word and encourage runners to stick together, especially in the dark. Minutes before my recent incident, I spotted a local mom and her neighbor. We chatted about this guy later in the day… and I knew I had to report him. And I knew I could no longer run alone.

The “local mom and her neighbor” label sounds funny now because these ladies are my friends. It’s funny, like kids, how fast that happens. This is after a recent feel sorry for myself session, too, where I whined – alone, at home, where else? – that I hardly have any friends. Like a middle school girl, thinking it only counts if we are not only in the same community but the same building seven hours a day, saying “BFF” and texting about bras and boys. Instead I realize while most are new friends in recent years, they are real. There is nothing stronger than a group of moms who help each other out in a pinch – after school and otherwise. Chats at the bell or while the kids play downstairs are like therapy, but better and cheaper. They all give me one more reason to get out of bed in the morning – sometimes literally.

Since creepy, high, suspicious guy happened, my new friends run to the house and we get our miles in. They were looking for a way to go longer and figured this plan was best because of my epilepsy.  The timing was perfect because I needed to taper down before the big race which is now in a little over a week. I have never been more excited or grateful for all the support. Click to read about Epilepsy Foundation run.

Then there’s Wally. He’s 72, still running “ultra” races of 100 miles and the subject of a video. I could tell the story was beautifully shot, edited and produced but I did not expect to end up with swollen eyes and last night’s mascara all over my face 12 minutes later. Whether you run or just run from things (guilty of that, too) this is worth every minute. Wally’s story. Thank you, Wally, for showing us what real strength is all about.