Author: sarahvcarlson76

I applied for an acting gig recently – a chance to play an extra in one of my favorite TV shows, Chicago Med, as a runner. I never thought I would get a call offering me the chance to do this, nor did I think I’d be so excited at the thought of spending 12 hours waiting to run a short distance when I work so hard to run long distances quickly. Plus, I could get paid for something I usually spend money on! Then reality hit. What if I can’t get any work done while waiting for my role? Worst of all, what if I had a seizure on set? The first what if is an important “duh,” the second one is a painful reality.

I realize some people may not believe I have epilepsy because I run, but I say it is largely because of it. Running makes me feel like I can beat epilepsy while my brain tries to prove otherwise. Much like an old friend and I recently discussed, it’s therapeutic. To me, nothing feels better than a race bib to give the curve balls in life a big “See!” It’s why I frame this picture, taken during my first marathon. Four weeks from now I’ll be running the Chicago race for the Epilepsy Foundation of Greater Chicago which is part of Charity Village for the first time! Please consider a donation of any size, it means the world to me. Click here to donate.

For two years after I was diagnosed, doctors did not know a brain tumor was to blame. More like the person reading the early MRI needed glasses or classes… but that’s another story. Back then, I had a dozen seizures a day and running or acupuncture was the only thing that prevented the mysterious episodes for hours. It has since evolved with significantly fewer seizures but no known trigger. Now they’re just as likely to happen on the running path as they are at my desk, all in the first few hours I’m awake.

I recently had one on mile four of the Elmhurst Running Club’s 20 mile training course. My partner at the time says I simply stopped talking and stopped running, which is typical. 30 seconds later I want to speak but words are stuck in my gut and throat. I know my name and address but it takes several minutes to spit them out. I forget what my first conversation is shortly after, but it’s clear to those on the other end.

I joined the club, in part, to feel safe. I wanted to make friends with other runners and I knew I shouldn’t be on the path alone for long distances. I wear a bracelet that  reads “epileptic” along with a name and emergency contact information. When this happened at mile four, my running partner knew the drill and we lucked out when another runner friend who knows my story and whose family member has epilepsy, was right behind us. I am forever grateful for how they cared for me that morning. They stayed cool and called the phone number to get me home. As soon as I could speak, I demanded we call to cancel the ride. Bossy and likely rude, I insisted epilepsy had stopped me from doing too many other things so I wasn’t going to let it prevent such an important part of training. I’ve never paced 20 mile so fast and felt so little pain the next day, either. I have also never been more honored or determined to run for a cause. Instead of focusing on the what if element during the race October 9th, my goal is to remember the names of 26 other members of the epilepsy community, running a mile for each. Please feel free to share a name and story with me.

Much like those who have seen countless of these over the course of years, no one showed any frustration, fear or discomfort during that recent mile four fight. But I feel horribly guilty, like I cause added stress everywhere I go. I already told my mom – my emergency contact – not to worry about race day. The truth is, I hate the idea that a seizure could throw such an important morning off. I fight that “what if” in life among countless others, which hover lately like the recent humidity.

Then I think of those who can’t function at all because there is no cure and in too many cases no treatment. One couple I know has a son not much younger than me whose epilepsy leaves him severely disabled, robbed of the life he deserves. I talk to his parents about treatments and feelings, something I pray helps them understand what their son can’t describe. Unlike what happens to me, he fights to make it through the day. A new medication is working for him right now, something so rare that they seem to hold their breath when they report it. They tell me he has so many scars from injuries that his mom still follows him around just in case. A mother the rest of us can learn from.

I think we all spend a lot of time worrying about the curve balls life throws when they will land wherever they want. Think about the lyrics “But if you try sometimes you just might find, you get what you need,” by the Rolling Stones. They refer to the focus in the 60’s: love, politics and drugs, how those might seem like a great idea at the beginning but not so much at the end. A simple yet profound wake up call about so many subjects. Many of us runners take off motivated by adrenaline induced confidence, later fear our legs are falling off but continue to focus on the feeling at the finish line. It’s all I need anyway. Along with a lot love and Advil.

Around the time I started having seizures on TV eight years ago, my new friend Andrea was driving to the dry cleaners. A seizure caused her to crash her car through the front window and destroy the building. Luckily no one was hurt, not even her lap dog passenger. I say “only in my world” a lot because I swear only in my world do I manage to meet people who lead parallel lives to mine. Working in the epilepsy community has given me a new perspective on my own condition too.

Andrea, now 70, had a partial seizure that caused her to mix up the brake from the gas and drive her car into her favorite local cleaners. Six months before she and I met at the pool Memorial Day weekend, I drove my SUV into my neighbor’s house. Ever since, I’ve been wanting to write about it and free my mind – my brain – of the story. Andrea was the sign I should. Some recent updated EEG testing gave me the time to write. Not to mention the day shift nurse named Andrea.

Pool side Andrea and I were chatting like old friends five minutes after meeting, reassuring a grandpa who took his screaming grandkids to the pool that day that loud kids are no big deal. I got the important details when the subject changed to weather small talk. Andrea wanted to get rid of old winter clothes so I suggested she head to the local Savers since they donate to the Epilepsy Foundation where I serve on the board: Learn how to help us here. I quickly learned we are seizure sisters. I prefer to keep the details of my accident private but like Andrea, I feel lucky and thank God every day that no one was hurt.

I always wish the community had a better understanding of epilepsy, from my friends and neighbors to the nurses and firefighters who see it every day. I think it’s my job to help. Epilepsy is like a long, unpredictable meal and I’m the vegetarian who has learned to carefully pick through meat courses. The good news is that there are almost always pleasant surprises.  

I turned 40 without a license but I am lucky to have amazing loved ones who get me and my children where we need to go every day. I don’t enjoy feeling 15 again but it’s not the first time I stopped driving since being diagnosed in 2008. I fear I’m the exception. Many people who live with uncontrolled epilepsy and don’t drive risk a lot both personally and professionally. It’s one reason the Epilepsy Foundation is so critical and why I run 26.2 this October at the Chicago Marathon. Please donate

I usually hate wearing sunglasses but I used them to hide my tears at the pool Memorial Day weekend with Andrea. I don’t know if it was because watching other kids made me miss my own – the bossy older sister chasing her little brother – or if sharing the details of my life history was a shock to my system. It hit me harder than ever that morning that life is all about luck. Our health, jobs, marriages or the EEG monitoring where I spend almost a week hoping for the same kind of seizures I usually pray will go away.

For some reason, I was bummed that I couldn’t offer to help Andrea by driving her somewhere. Then it dawned on me that meeting someone with the same survival story and talking about it is the greatest gift. I can only hope she feels the same. I don’t think it was a coincidence that we ended up next to each other at the pool that day. Her story reminded me what the effort to survive and thrive is all about. In her case it was after the same crash, not only at an older age but after a battle with cancer.  

Whether I see Andrea or not by the pool again this summer, I hope I remember to thank her. For never settling. Not on anything in life, especially not on seizures.  

I am obsessed with running, desperate to train and race as often as possible. The best part is when friends and family ask for advice about miles, shoes, weather, injuries, you name it. I get a special kind of runner’s high when playing coach. I’m told runners make good leaders and clear thinkers so I figure why not keep moving? I’m also inspired by other runners, no matter the distance or speed. I love the head nod hello with the regulars on my training path.

I am also a news junkie, vegetarian, justice seeking mom who finds piano to be another form of therapy. Even listening to my kids practice is soothing. I opened the windows on one of the recent 60 degree winter days and played my favorite, Pachelbel’s Canon in D.

My kids, who just had their own recital, get a real kick out of the fact that I can still read music I learned 30 years ago using the hand-written music from my teacher in Oak Park. I used to think I would become a professional musician or dancer as a kid, so it’s no surprise that “What about TV news?” came out of the consultant’s mouth at UW- Madison when I struggled to pick a major.

I just finished two books that make made me want to practice more piano and pick up speed on both my professional and running paths. The first, a memoir, is written by a friend in Madison, a pediatrician who opens her heart and pours out personal details about her battle to beat epilepsy. Dr. Kristin Seaborg wrote “The Sacred Disease” and beat seizures with a tremendously successful career and three, healthy, beautiful children. Hers is one of the most inspiring books I have ever read:  Kristin Seaborg “The Sacred Disease”

The second book, Half Time, encourages us to make a difference and find meaning in the second half of life. My guess is that it falls into the self help genre, which would normally send me running, but I had whispers that had been shouting at me about this for years. Half Time is based on Christian values while managing to speak to and about those of varying or no religious affiliations. The concept is “from success to significance,” which I imagine someone has used as a tattoo by now. If not, it’s a really good idea.

I do not fit into any professional or personal categories the Half Time author refers to, something it took me a while to be proud of. My unique status is my best friend. I lost my first career to seizures and I used to feel forced to allow my life to be controlled by the condition. Today, I embrace it and use my experience with epilepsy, among other things, to help others who suffer. Just before these two books were handed to me as gifts (talk about signs), I decided that in order to feel like I was living, I had to find a way to make a difference for a living. Soon after, I got my way.

I am the official Manager of Virtual Sales and Social Media Strategy for OWP Pharmaceuticals. OWP Pharmaceuticals site: click here . OWP Pharmaceuticals will sell epilepsy medication and share profits with the ROW Foundation for those who struggle with access to diagnosis and care. ROW: Rest of the World. There is an enormous population of untreated patients all over the world, some with no way to even be diagnosed. OWP is a tremendous business and non-profit run by real people who care. Please check out the website and head to Facebook and Twitter and share, like, join and follow the pages as much as you can. The OWP Facebook page is called Heart for Epilepsy: OWP (Heart For Epilepsy) Facebook page: click here.

I do not regret becoming a public spokesperson when diagnosed in 2008 because, well, how else do you handle it when you have seizures on TV? I also felt strongly about raising awareness. 1 in 26 people will have epilepsy in their lifetime.More suffer from epilepsy than Parkinson’s Disease, multiple sclerosis, muscular dystrophy and cerebral palsey combined. I didn’t know all my public speaking and social media honesty would hurt me professionally. Now I know it was meant to be.

When I’m not working for the 1 in 26 at OWP, you’ll likely spot me training to do 26.2 on the ground to raise funds. Thank you to everyone who has given me hope and help during my half time journey. And my apologies in advance to those who don’t get out of my way on the path from success to significance.

“Sometimes the challenge isn’t to move forward. Ships don’t move forward while in the grips of a big storm. To succeed during a storm means just to stay afloat. Don’t worry so much about getting ahead. There will a time for that. For now, just get through.” – Doe Zantamata

 

 

 

Filing taxes is a pain. Refund or not, it feels like I’m giving a stranger permission to look at me through a microscope when I wake up in the morning or while I’m flossing my teeth. It’s like starting what you hope will be a best selling memoir and dying before readers get to the happy ending.

I recently dug into my tax detail again and learned I am Head of Household, which always cracks me up. It also reminds me that I’m proud to be a single mom. I want to go on a run in this below zero weather with some kind of “Single Working Mom” jersey.

Something – maybe it’s Saint Valentine – is making me feel particularly positive and energetic lately. When I look at my obstacles, I see a 40-year-old marathon runner with epilepsy who does hurdles after each mile. It makes me run faster but I also wish I could hit the “pause” button on life.

My ten-year-old Madeleine is in fifth grade, which means middle school next year. She loves My Little Pony, eating chocolate and teaching her friends songs that I now have memorized. While she uses her cell phone, Madeleine forgets about it as often as she uses it. She loves to climb trees and claims she hates anything “girly” despite her love for My Little Pony. I’m loving every minute of this soon-to-expire version of my daughter.

Madeleine recently graduated from the school DARE program. Classmates read essays on why it’s important to say “no” to alcohol, drugs and violence while parents held their breath. As a member of the PTA, this was the event I volunteered to help with. It was a piece of cake, literally. The DARE police detective brought the cake and all l I had to do was bring drinks, plates and forks, cut the cake into 50 pieces and hand it out. I’m not an insider here, having arrived when my girl was in third grade, but I felt at home. I held back tears because my girl was even more at home… and because of a recent preview from the Big Man Upstairs.

Last weekend I collected old boxes from my parents. The one labeled “pots and pans” was actually a countless supply of old notes and pictures and disintegrating hand-made string bracelets from my middle school days. Junior High back then, for the record. I went from loving Michael Jackson to making it clear that I truly loved Fred, Billy, Bob, Nick and Mike.

I was only a year older than Madeleine when this nonsense began.We all know it never ends, either. I was relieved to have two of my middle school BFFs over a few days later to share the old notes and photos with. We laughed, cried and played a tape of mixed songs before I boxed it all back up. Luckily, all Madeleine wanted was my old Girl Scout patches from 1985. Ethan wanted to see Michael Jackson dance so I showed him videos on my phone and did the moonwalk.

The day after DARE graduation, Madeleine had her first audition as an aspiring actress. The local high school wants a girl from the district to play Cosette in their Les Miserables performance this spring. 70 girls showed up when they expected about 25. I got a lot of teenage-toned “Mom! Please leave me alone!” during what felt like our three-hour wait for her 60 second audition. I thought of my middle school notes while I prayed that she would hit her high notes.

I really prayed, too, which is something I started doing more lately. I didn’t start for Lent, it just kind of happened. Lent is something Lutherans like me are forgiven for forgetting about. I’m usually reminded when I see Catholic friends with Ash Wednesday service proof on their foreheads. I even forgot the religious rules before praying my Catholic boyfriend would like a beef stew. I think my prayers worked, but I’m a vegetarian so who knows.

Whether the Big Man Upstairs, Jesus or my Divine Angel is inspiring me to have a conversation, I’ll take it. Filing taxes as Head of Household happens to me every year because of events most people would consider negative, but they make me thankful now. They help me run faster toward the finish line.

I want to put this Head of Household year on hold. So much will change that I will miss. The fact that Saint Valentine is the patron saint of epilepsy, Read here: St. Valentine patron saint of epilepsy reminds me why it’s not the countless marriage proposal commercials on T.V. but Mick Jagger’s words on my mixed tape that are my focus. You can’t always get what you want. But if you try sometimes, you just might find you get what you need.

Happy Valentine’s Day.

I always imagined celebrating my 40th birthday with some kind of massive party, one that left me really tired the next day and not ashamed to admit to an even more massive hangover. Then I turned 40 a few weeks ago and was exceptionally happy to have a quiet dinner with my parents and John. Not to mention my birthday is January 1st, so the number of people willing to party hard that day is few and far between.

Then I realized… duh…. I get to hula with the hosts of the century in Madison on January 23rd! And you can still join me. I’m so glad I saved myself for Lily’s Luau for Epilepsy Research. I even saved a picture of myself in a promo – please pardon the mid-sentence shot from the TV screen. Click here for details on Lily’s Luau!

I decided to list 40 reasons why YOU should attend Lily’s Luau in Madison this coming Saturday, January 23rd. It’s all for the CAUSE and eventually a CURE. It’s a long list but it means the world to me.

 

1. Lily’s Fund donates to the U.W.-Madison. I mean, really, is there a better University?
2. Union South – the new one, not the one I knew in the 90’s – is a beautiful venue. And you can stay overnight!
3. Free parking. (The Chicago girl sighs….)Free Parking Location
4. You can REGISTER NOW to bid on auction items … whether or not you can attend. Click here to register to bid!
5. Some of those auction items are for grieving Packers fans. Yes, I was born and raised in Chicago and live here again but I love the green and gold.
6. Making friends is the best part of the night. I have epilepsy, and it changed the course of my life in many difficult yet exciting ways. I am looking for new friends in the battle so please come if you need someone to talk to. It’s OK if you forget my name,just say “hey,” and we’ll chat.
7. At least one scientist will be wearing a grass skirt. A male. And I hear it’s good luck to dance with men in skirts.
8. The food. Did I mention there is an endless supply of amazing food? Mini tacos, veggie pot stickers, coconut shrimp, sushi rice salad…  and the dessert, well, I’ll let you check the full menu out online, it’s ridic. Lily’s Luau Menu
9. The list of local sponsors is incredible and I can’t thank them enough. Here are the “Diamond Head” sponsors: Clifford & Raihala Attorneys at Law, Culver’s VIP Foundation, Dean & St. Mary’s, First Choice Dental and MHK Retirement Partners. Here’s a link to the rest of the Generous Sponsors
10. It’s sponsored by News 3/Channel 3000. If you don’t watch them now, please do. And either way, it’s fun to see the folks you see on TV in person. This year we will miss morning anchor Charlotte Deleste but I will hopefully fill some small portion of that gap on the stage again with my friend Susan Siman.
11. I’ve been known to do push-ups for the right amount of Lily’s donations.
12. Your attendance helps fund cutting edge research that will make a difference for people living with epilepsy. The next several reasons are why that matters so much.
13.  1 in 26 people will be diagnosed with epilepsy in their lifetime.
14. 3 million Americans have epilepsy – 65 million around the world – and more than 200,000 are diagnosed every year.
15. Epilepsy impacts more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined, yet receives fewer federal dollars per patient than any of these.
16. In two-thirds of patients diagnosed with epilepsy, the cause is unknown. (It took doctors two years to diagnose me with the brain tumor that caused mine.)
17. Research could help folks coming back from serving in our country’s military, at high risk of developing PTE (post traumatic epilepsy) from head injuries.
18. Head injuries in sports that lead to concussions, can also lead to epilepsy. Athletes need our help, too.
19. Lily’s Fund Fellows: Research fellowships let young scientists or physicians work alongside experienced faculty members. By underwriting new fellowships at UW-Madison, Lily’s Fund encourages young scientists to focus on epilepsy.Fellows
20. Grace Grants: These $100,000 grants support projects carried out by individuals, cross-disciplinary teams, or entire departments.Grace Grants
21. Special Research Grants: Research grants that need immediate attention. Special Research Grants
22. Lily is an inspiration. She is a local girl who has struggled with and kicked epilepsy’s butt her whole life.
23. So is Grace. These girls are the reason we have this life-changing event and they attend every year.
24. The organizers, Anne Morgan Giroux and Colleen Penwell, moms of Lily and Grace, always come up with something new, fun and meaningful for the event. They are hard-working, sweet, hilarious and throw a tremendous party.
25. This Luau #8. Please help us break record numbers in terms of attendance and research.
26. The neuron project is one of the coolest, most creative ways to draw attention to epilepsy and the fight to cure it. And it’s thanks to Lily’s Fund. Read about the Neuron Project here. Or you can watch a story about it on the news! Neuron Project on Channel 3
27. Searching for that clip leads me to how I made news, as a newscaster once upon a time, whether I wanted to or not. I, along with millions of others, need more people to know what epilepsy is so no one thinks twice about hiring us.  Story about news reports
28. Kitt Foss sang to us at last year’s Luau. You have to show up to know what will give you goose bumps in 2016. Read about Kitt’s story in the Wisconsin State Journal
29. Raffle tickets are only $20 or 6 for $100! And you could win $1,000 in custom jewelry from William Thomas or a two-year 20,000 mile car lease from Uptown Motors. Merry Belated Christmas or Hanukkah, right?
30. Minnesota Coach Jerry Kill gave up his coaching career due to seizures. Jerry Kill story This shouldn’t have to happen. Too often we can’t find medication that works well enough for folks to continue professionally. But it didn’t stop Lily’s from getting the Badgers and the Gophers to jump around. Camp Randall Honored the 1 in 26
31. The list of “famous” people who have epilepsy is long. Learn about one you are a fan of and help us with the cause. Famous People with Epilepsy
32. There is no football on – no playoffs – on Saturday. Make a date with us.
33. It’s cold outside but it’s warm in Union South.
34. There is no political debate on – that I know of. And if I’m wrong, you can DVR it.
35. Bring your kids! Or get a sitter if your kids are too little and call it a date night.
36. Stress can bring on seizures. We don’t know enough about epilepsy and too many people go untreated.  Research can help.
37. About 50 out of 100 children outgrow epilepsy. Let’s make it “all” kids.
38. Epilepsy is most commonly diagnosed in people under 20 and over 65. They need our help.
39. How cool would it be to party with scientist who came up with the cure?
40. There are 40 kinds of seizures. It’s too many but we are going to beat epilepsy.

I am not running the 2015 Chicago Marathon. That sentence is extremely hard to write and the reality hard to face. I’m writing about it now, as a volunteer on the course passing out fluids to the elite runners. I just cheered on the wheelchair athletes with tears in my eyes.

I’m assiged to a group of high school cross country runners, their coach and a parent. Strangers I’ve gotten to know pretty well since we met up at 5am in the burbs.

The elite marathoners run something like a five minute mile- and hit our 40K mark by 9:30. I’m excited to see them.  And my legs are itching to run, I won’t lie.

My instincts told me to pull out of the race about 6 weeks ago, after training up to 18 miles, because of changes in my epilepsy medication. I’m doing really well and so those same instincts tell me I should share this.

The people at Imerman Angels were wonderful when I got in touch about my need to stay home on race day. Their work, all the non-profits, are the most inspiring of all. I cannot thank them enough for their understanding and generosity. I hope those with cancer or whose loved ones are fighting the battle will be in touch with Imerman, or let me know and I’ll get you there. Donate if you can, too, please.

I feel it is important for me to point out that I’m still running, I even put in 7 miles yesterday. It’s become such a huge part of who I am. I will do the marathon next year, after I turn 40, and break my record. I made the decision to pull out of the 26.2 mile long race because my doctor was adjusting seizure medication and I had no way of knowing how it would impact my training and my health. My health is not as much fun to manage as the pain after a 20 mile training run (I know it sounds nuts) but it is more important.

I also happened to make the decision shortly after I had a scary experience on the path near my house. It had nothing to do with my health but everything to do with how my gut, my instincts, are my best friend. The path is remarkably safe in Elmhurst, Illinois, but I wouldn’t recommend taking it when it’s dark outside. I am often there during the more popular days and times. This experience took place on a Saturday morning in broad daylight with gorgeous weather. Two miles before the path hits the road to go back to my house, I had to pass a guy. This happens all the time, so I thought nothing of it. He was wearing sweats and a hooded sweatshirt, reminded me of Rocky from behind, joggling slowly and shuffling his feet.

Luckily I was running without music so it was obvious to me that just after I passed him, he sped up hard. So I picked up my pace but it didn’t increase the distance between us. I noticed immediately that there was no one in front of me for as long as I could see. I felt a burning in my chest as I ran faster and harder. Luckily, he couldn’t keep up. When I got to the road, I slowed and turned around to make eye contact with Rocky. I was right – he didn’t look trustworthy, not nearly as friendly as Sylvester Stallone, to me at least.

I think of this as it relates to my decision to skip a year of marathon running because I am finally trusting my instincts. Why it has taken nearly 40 years, I wish I knew. But it feels awesome.

Which leads me to the story about a meeting I had at LinkedIn this week. I was given the opportunity through the Epilepsy Foundation of Greater Chicago to speak on a panel and my gut told me to go for it.

It turns out a gentleman who works at LinkedIn started what’s called Enablein. His youngest child was diagnosed with Down Syndrome and he has created (in their words) “an inclusive space to discuss creating opportunity for EVERY member of the economic workforce.” Organizations like the Epilepsy Foundation are partnered with LinkedIn to help people understand the needs of those around them and to truly understand how those with disabilities are often just as able as others. I pointed out during my talk that I often think I am a better employee because I have worked so hard to prove myself. I put up with things I might not otherwise because I know my dream job is in the future.

I was one of two people on the panel to share my story and take questions. I have done this before and I’ll admit I feel like a fly on the wall when it’s happening. I still can’t believe what I experienced and how far I’ve come since. I am proud to share my history and feel like I have a new mission in life to be as open as possible about who I am.

After our panel discussion we were partnered with LinkedIn employees to discuss our goals, ask advice and take a look at our “profiles.”  I still have to tweak mine but felt this blog, which I plan to share there soon, was the most important to me on race day.

Running is a huge part of who I am. It makes me a better mom, daughter, girlfriend, friend and employee. I can’t thank those who have reached out to help me and support me enough. I think I fear an overly emotional “thank you” will result.

But my gut says that’s ok.

The other night, a tornado hit Illinois near my house outside Chicago. My kids got scared, probably because the news junkie in me has every alert on her phone beeping “breaking news.” We headed to the basement despite the fact that the cost of water, broken pipes and sump pumps are much more frightening.

My son, as usual, now has endless questions about tornadoes. And as usual, I have been reminded of my time in TV news and the need to know the difference between the F1 and F5, how fast they go and how wide they can be, it’s really unbelievable. It’s hard to believe Stoughton, Wisconsin was hit 10 years ago when it feels like yesterday.

I also thought of Dorothy and friends and how much this same,now eight-year-old third grade boy loved her and the Wizard of Oz when he was only four. He was “in love” and we were in love with the idea of him being in love.

I have thought all week about the definition of “love” since a really special wedding I attended. It was an absolutely beautiful ceremony where a butterfly was included as an unexpected guest. The second time I spotted it, the bride and groom were reading their hand-written vows. “Love is not an emotion, it is a promise,” I heard. I managed to keep it together until that point, when I wished I had remembered tissues. To stop tears from flowing like a waterfall, I focus hard on the story of the couple up front, pray for their souls in my own way, and wait until later to think and reflect. Back home I think if I have the real thing, the promise, why do I want marriage again too? I guess it comes with the territory.

My own story of love is a lot like Dorothy’s journey down the yellow brick road. Over the years, married and not, I would often feel like I woke up and didn’t know what happened or where I was. Now, there is no place like home. I am back home after 20 years with the wrong characters. This Dorothy has found a man who can find the courage to not only love me with his whole heart, but also never leave. I met the love of my life and those dreams I tried to never “dare to dream” again started tugging at my heart strings.

My first grown-up “love,” my scarecrow, had a problem with my brain when it failed. He failed to stop and think about his own brain not thinking straight, vows were broken and it’s hard to forgive. I work at it all the time, though, I swear to God I do.

The second “love,” my tin man, was more like a knight in shining armor but with shining teeth and belongings and a phony heart like the one in the movie beating on the inside. Thank God he bailed repeatedly so I could figure who was the desperate, stupid one (me).

Today I have no doubt that the love of my life is my lion. The bravest, strongest man I know who is so busy making other people happy and working hard that he has no idea he is the bravest, strongest, sexiest, sweetest, smartest, most devoted man around. The only thing that could make this lion cowardly is injuries on the road of love, or the lack of love. If I had the nerve, I would tell those he walked it with before what I think of them but then I would end up having to write about my theory on witches.

This is absolutely the first man I have been with who gets what true love is. His brain has had vows straight his whole life and his heart is so real and full with the right kind of love it is about to burst. Mine already has.

Love may not be an emotion, but it certainly feels like one when it takes over our thoughts and feels like the right one for all the right reasons, with or without a ring on anyone’s finger. Love is even more than a promise after we say the word forever, even if marriage vows never happen.

I’ll never forget when friends and family got the nerve up to ask me why John was so special in my life and I was tongue-tied, which is rare. It was hard to describe because it was so easy, for once. One part of my path in life felt clear. We are wise hearts based on two very rusty orange marathon paths of love.

It’s certainly painful when love’s promises are broken but even more painful when no one wants to make them, or is able to keep them with you in life. I don’t need a wizard to remind me that there is love in the air, it is a promise that will survive any storm.

I accidentally put that song, far too popular on the radio years ago, on my IPod. Twice in one album, actually. So whenever I hear it while running, I usually “skip” as fast as I can. Not literally, just listening. But that might be fun for tired legs.

During my last distance training run, when “Call Me Maybe” came up, I ran faster, thinking of my “tween” with a cell phone. Yes, she is 10 and she has one, a birthday gift so she could text her already tween friends and her dad, despite the drama the device has created between us (shocker).

You can call me lots of things but not “maybe” on the cell phone. It has been quite the friend to me when it comes to work, friends, dating, learning who might know each other better than I expected in my life.

Most of all, the only child turned single mom in me needs this (on it now headed home from work) desperately. I read the news, find out who among friends I don’t see anymore is traveling, working, celebrating a birthday. Every day I wish I talked on it more. Most days it’s because I’m working, on the “quiet car” on the train, or have kids who need my attention.

But I must admit, it always makes me miss the old days of land lines. The kind of phones my kids will never know. The kind my generation was the last to know. The kind that forced us to memorize every number. It was like a contest. We knew dozens of numbers for friends, family members, neighbors, eventually boyfriends, (sorry John) and our parents at work. We had to call and ask for those people, then sit by the phone at a certain time if someone was supposed to call back. If it was important enough.

We got to know voices by heart, family members too, like it or not, and there was a trick to calling and hanging up on a crush so they couldn’t hit *69 and call back. Those were the days right?

The key is that we spoke, learned some serious phone manners and we certainly never had to wonder whether devices were more important than people. People made a lot more eye contact in the 90’s and didn’t get to text when they were afraid to talk about something.

I still know my mom’s old downtown Chicago work number because I fell asleep memorizing it. My mom also managed to take our land line phone number of the dinosaur ages and make it her cell phone number. Coolest cell move ever, and that was before cells were so darn “smart.” I just cashed a check using mine but I haven’t stopped wondering whether the teller jobs are at risk, and how those girls are doing.

So my new goal, as the mom of a new tween, is to get my girl to remember to use her phone to call. To know numbers. To stay in touch with friends, new and old, using her voice. And to put the phone down from time to time, give it a rest.

Let’s see if I can take my own advice, too.

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.

I was having dinner, and some cake, with my boyfriend and his younger son, on that younger son’s birthday, when the waitress loosely referred to me as the teenager’s mother. I tried to catch her – I did the “ugh” thing with my breath – but she walked away. I realized it would have embarrassed the just-turned-16-year-old, so I gave up and kept taking bites of chocolate. I realize now how important it was, maybe more so to me than others. But what do I know? Maybe it means a lot to him that people know I’m not his mom (not to mention you can tell because he has curly hair, he looks as Italian as his last name, and he’s 6 foot 2 to my 5 foot 3) But I digress. I just want to be sure that people, who know the divorce statistics in the world, despite the fact that some people are victims of them and not fans, don’t assume we are all each other’s blood when we are hanging out with a kid. OK that sounded weird and gross.

I also know my kids, who are out in public plenty with their step-mom, look a lot more like her and if I had to guess there isn’t a lot of correcting going on. But kids who have suffered from the torture of a divorce need to remember two things: one, be proud of exactly who we are and where we came from and two, be aware of the fact that we are victims of a society that marries too quickly and easily. I always point out, with passion, that I do not regret a minute of my marriage, because I wouldn’t have my babies. However, when you’re left with a disease, a 1 and 3 year old and a cheating husband, it’s pretty troubling. Perhaps our children can learn from the issue if we don’t brush it aside and say “Ah, divorce is just so common.” As long as they know they are loved and we show them that love. And as long as they understand what family is.

Next time, I plan to turn my “ugh” into a “I’m not his mom, I’m just his girlfriend,” politely, with a smile, so the waitress might think twice about saying it at the next table. I was a waitress once, it was one of my favorite jobs, honestly. At the rate I’m going, being a waitress might be a good way for me to contribute to the social issues of parenting and divorce.

Plus, maybe she would have brought us an extra piece of chocolate cake.