Category: Kim

I Hope You Dance

Published on by heiditea1 Comment

Our 6th annual Dance for Brain Aneurysm Awareness was held last night. Thankfully, we dodged a bullet with all of the snow storms around us and a cold, but clear night greeted the guests at the legion hall in Westbrook, Maine.

For the first time, we held a “theme” dance and this year the choice was an 80’s theme. Some of the 80’s-inspired outfits were truly fun and brought back a lot of memories for me in my 20’s. Yes, I’m aging myself there.

As people started to filter in, the drinks started to flow, the music started to pick up, and the money jumped out of people’s hands. The numbers haven’t been tallied yet, but we feel there was a great turnout and that a lot of money was raised to go towards education, awareness, and other brain aneurysm events. Granted, we’d still like to get some education and awareness out there, but it’s truly not the perfect event for that kind of interaction. Most of the people are there because they know someone who has been affected by brain aneurysms, and that’s enough for us.

I can only do so much helping to setup and I’m horrible with math and money so I leave that up to the experts.  As a result, I don’t feel very “needed” during this event and the loud music & flashing lights from the DJ doesn’t lend itself to in-depth conversations at the tables. It’s all about the drinking and dancing. I’m just a survivor.

Dancing to a good song is something I love to do and this is basically the only time of the year I do it. The last few years I have only danced to one or two songs throughout the evening. Usually it’s Bruno Mars…I just can’t sit when Uptown Funk is played.

I have taken photographs the last couple of years during the event and try to take photos of people at the tables and on the dance floor. Our committe member LeRay is a 40+ year brain aneurysm survivor and I caught her dancing with fellow committe member, Mira, who lost her daughter Karolina to a ruptured brain aneurysm. It was a poignant  reflection of the evening to see these two dancing hand in hand in the middle of a circle of friends and family.

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Mira & LeRay Dancing

As I was smiling and enjoying watching LeRay dance, a woman I didn’t know came up beside me to indicate she hopes her family drags HER up on the dance floor when she is LeRay’s age. I smiled and said “I hope so to!” And meant it. Then my own story caught up with me.

Perhaps it was the nostalgia of the evening with the music and outfits, but I was hit by a wave of emotion as I thought about my own story and how I loved to dance with my sisters and my mother. Pain ripped through my heart and the tears started to form as I remembered I’d never get to dance with my mom and sisters again…until I meet them again.

Thankfully everyone seemed to be ON the dance floor at that moment so I made my way through the crowd with my camera in hand to get some air. Dave caught sight of me as I was struggling and I tried to tell him what had happened. I’m not sure I did a very good job of explaining and know that there wasn’t much he could say to me at that moment to make me feel better, but he gave me a strong hug and asked if I was going to be okay. I said yes, but knew I just needed to get out of the building for a bit and get some fresh air, which I did.

Breathing in that fresh, Maine winter air was a welcome respite and I was soon joined outside by Rob Kurka, whose mother MIra was just dancing with LeRay. Rob knows the pain of losing a sister (Karolina) to a brain aneurysm as well and he was kind enough to listen and agree with me that it just “sucks”. We also agreed that people who complain about really, really minor things that don’t mean anything in the grand scheme of life, are truly annoying. LOL I almost think Kim and Karolina sent Rob (and perhaps myself) outside for us to have that moment together. Then I went and screwed it all up by asking him a personal/political/military question. I’ll blame the beer.

I went back inside and was then pulled on to the dance floor by a stranger. It was fun dancing with him and I was grateful he insisted. I’m grateful and blessed to be here TO dance. I’m grateful we have our small group here in Maine to bring awareness and educate people about brain aneurysms, and I’m grateful for those who put in so much work gathering silent auction items, selling tickets, setting up chairs & tables, bartending, DJing, and buying food for the dance. I think everyone had a great time!

Even though I suffered an emotional lapse, I know there are many angels watching over me and that they were dancing with me…even when I was dancing all by myself.

”Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance.

I hope you dance, I hope you dance.”

Lyrics “I Hope You Dance” by Lee Ann Womack

Dancing at my wedding.
My sisters and I dancing at my wedding.

So Many Stories

Published on by heiditea1 Comment
Kim and Dori
Kim and Dori will be honored on the car.

It has been five years since my sister Dori died from a ruptured brain aneurysm. She was the same age I am now. She left behind a 15-year old son. She didn’t live to see her son turn 16 later that same year and wish him a happy birthday. She didn’t live to see him graduate from high school and give him a hug and tell him how proud she was of him.

Dori’s story is just one of the many brain aneurysm-related stories  my husband and I tell when we meet other people. We have met so many over the last 11 years.  So many wonderful, uplifting survival stories, but also too many heart-breaking reminders of  the devastating, life-changing effects a brain aneurysm can have on a family.

I survived my first brain aneurysm rupture in 2006, but just two years later Dave’s niece Kim died suddenly of a rupture at the young age of 32. Heart-breaking, soul-shattering and devastating our small family to the core.

Each year we meet more individuals, more relatives, more survivors, and more medical people with brain aneurysms being the common thread that binds us.

Dave and I didn’t ask for this cause. No one does. If found us.  After Kim died, we could have easily turned away and ignored the reason behind her death and behind my near-death experience. I could have walked out of the hospital after 20 days and 6-months of recovery and never wanted anything to do with brain aneurysms again. Some do. They think once the doctor “fixes” them, they’re all set to go on with life and never look back.

However, to ignore the issues that brought us to that life-threatening event, or to ignore the sudden death of a loved one or friend, is to give this disease the upper hand and potentially kill & disable people.

Yes, we started the KAT-Walk in 2009 to honor Dave’s niece, but we also want to educate the public to the symptoms and treatments available for brain aneurysms.  Our event, and other events throughout the year, have become bigger than just a local walk to honor a beautiful, vibrant young woman.

It’s the STORIES that continue to steer this wee boat in the storm.

It’s the STORIES that show us the incredible strength one person can have despite overwhelming odds and despair..

It’s the STORIES that tear out your heart and remind you just how precious life is.

It’s the FACT that by sharing our STORIES, we can actually save a life if we’re able to educate someone to get to the hospital and fight for your own health and the life you share with your family.

All of those stories are IN me now. I KNOW those stories. I KNOW those people. I have my own heartache and my own medical struggles I am still dealing with, but so does everyone else. I’m not special in that regards and I’m not famous by any means, but I CAN do something and I CAN help lend comfort, share knowledge, and yes, save a damn life.

So, this Saturday, when I walk to honor the lives of Kim and my sister Dori, I’ll also walk to celebrate my survival and all of the STORIES we have been told the last 11 years. I feel the stories of everyone I’ve been in contact with. We need to help people understand what a brain aneurysm is. We need to share our brain aneurysm stories.

I hope you’ll join us. Visit MaineBA.org for more event information.

Brain Aneurysm Awareness
Brain Aneurysm Awareness

Life. Support. Music.

Published on by heiditea3 Comments

At last month’s brain aneurysm support group, we watched a documentary about a musician from New York City who, against all odds, survived a ruptured AVM. Through the amazing support group around him including family and friends, he was able to not only recover, but prove most of the doctors wrong with their devastating diagnosis’.  Watch a brief follow-up online about the documentary with Jason and his sister HERE.

Tonight, we were able to meet Jason Crigler in person, hear his story first hand, and ask him questions. There truly aren’t enough descriptive adjectives to convey what one feels after hearing and seeing Jason’s story.

In 2005, soon after he returned home from a year-long stay in the hospital, Jason's family (his daughter, wife and father) take him for a walk in the woods.

He is a soft-spoken, warm, and funny man. If you didn’t know his story, one would never know the extent of the struggles he and his young family have had to endure.

Jason’s story was documented by a friend who video taped much of his early recovery and made it into a critically-acclaimed documentary called LIFE. SUPPORT. MUSIC. It’s painful to watch, especially as a survivor of a brain injury myself. He could be me…I could be him. The uphill battles are all very similar, but Jason was very motivate to recover with a new-born baby girl, a budding music career in New York City and a family that sacrificed their own lives and comfort to care for him on an hourly basis.

Tonight was very special and it’s a damn shame more people (even from our own groups) could not attend this widely publicized event. The old adage, you can lead a horse to water but you can’t make him drink, held true tonight I guess. You get what you give…and some people give more than they have to give, but receive very little in return. It’s a damn shame.

Jason’s story is a story that needs to be heard and obsorbed. I only wish I could speak as eloquently and effectively as Jason does, or I’d take my little stent, coil & clip show on the road too. But who the hell would show up to listen to me? Probably only just a few. I know my story isn’t nearly as compelling. We can’t even get an article written about our group.

There was one article written a couple of years ago. About a woman who only came to our meetings maybe two times. She was certainly very attractive & photogenic and lived in an influential area, so that right there was two up on me. Even the one small TV spot we DID have ended up being shared by a completely un-related disease, so we couldn’t even get a full 2-minute spot for ourselves. Really? What DO we have to do????

But…even if we did…would it make any difference? We met a few new people tonight and we welcomed them with open arms as we always do. I hope we see them again and that they spread the word about our group and our efforts to raise brain aneurysm awareness in the state. Exposure could save lives….WE could save lives.

I think you’d be hard pressed to find a group like ours (or at least that one special person) that gives such personal attention to those who have reached out to us. I don’t think the president of many organizations would send personalized emails complete with moving letters and related photos to someone who writes and donates and expressed great regret they’ll be unable to attend this year’s event after having attended all of the other previous ones. I think it’s the personal touch that sets us apart from other groups. The behind-the-scenes workings are amazing and the hard work that goes into every event, every email, every newsletter, and meeting follow up, is more than most are doing. Does it matter?

People need to DO more. They are not and it could mean lives of people are being lost as a result. Picking up food for an event will feed the volunteers and participants. For one day out of YOUR life, you could help an event run smoothly and make it a success, meaning those who attended and those who heard about it and read our materials will remember what the event was about and LEARN….and potentially save a life of the next person who has the “worst headache of my life”.

(stepping down off my soap-box now)……back to Jason Crigler.

Jason’s positive & simple attitude about his AVM and recovery is truly inspirational. Many things he spoke about tonight touched me deeply and certainly would have touched a lot more people if they had taken the long hour and a half out of their busy lives.

One thing he said was that there is “strength & power in thought”. We can choose to think we’re failing or think we’re succeeding and it can truly effect the rest of your body. He admits to bad days and depression and despair just like the rest of us, but it’s reminding yourself of the struggles you HAVE overcome and how far you have come that one needs to be reminded of. We all have struggles on a day-to-day basis, but it’s how you deal with, and think about them, that can lead you to a path of strength and power.

I needed to hear those words tonight. My 10-year Annie-versary of my ruptured brain aneurysm is coming up on Oct. 4th. I’m lucky to be here. I know that. I also know others haven’t been so lucky and if sharing my story can save one life, I’m going to do it. If complaining about a lack of support can garner a little bit more, then I’m going to do it.

My sister died from a ruptured brain aneurysm. I had to see her lying in a hospital bed completely unresponsive on a ventilator, with her head shaved, with wires in her open skull and a drain relieving blood from her brain. She was basically gone at that point but we held out hope for a miracle. It never came. I may have failed saving my own sister in educating her enough on the signs and symptoms, but I MAY be able to save one other person. I MAY be able to help one person recognize the symptoms and get them to a hospital in time.

I have to hold on to that…otherwise, why was I saved and Dori wasn’t and why was I saved and Dave’s beautiful 32-year old niece Kim wasn’t? Two beautiful, sweet, funny souls who did nothing but good for others. I’m not nearly as beautiful or sweet, so I have funny going for me…and a chance to DO something in this world and get the word out and share my story.

I may not have friends who care enough about me to film a  documentary, come to our events and support me, tour the country and make money from it, but I DO know I am blessed to be here still.

THANK YOU Jason, for sharing your story, answering our questions, and driving all the way up to Portland to meet with us. And thank you for making people aware of the struggles people with brain injuries can endure…and more importantly, can overcome. You’re a true inspiration!

 

Racing Against Brain Aneurysms

Published on by heiditea2 Comments

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The title says it all: the sooner we get the best, up-to-date accurate facts out to people, the more lives we can save!

Such is the message behind the hood and rear, deck lid sponsorship on the #52 Chevy Camaro for this weekends NASCAR Xfinity race at New Hampshire Motor Speedway.

The Lisa Colagrossi Foundation, a worldwide leader in raising awareness for brain aneurysms, sponsored the car driven by Iowa native, Joey Gase. The foundation asked for people effected by brain aneurysms to donate money to have either their name or photo of a loved one on the car during the race. The amount of exposure Joey and the car got on this national event was priceless.

Dave and I were asked as special guests to attend the race. And we cannot say enough about Joey and his father Bob. They were extremely generous with their time and hospitality. We certainly never demanded or asked of anything, but they offered so much from golf cart transport to ear plugs and water. Respect breeds respect.

The car was beautiful (if you can say that about a stock car) and seeing it in person was emotional. Watching Dori and Kim’s photo leave the garage area was almost like setting them free to go fly on the track. 32 individuals effected by brain aneurysms were on the car including notable figures such as Albert Haynesworth (NFL), Maryam Dabo (James Bond girl), Andre Jones (TJ Jones/NFL, Detroit Lions father), and Ashley Harris (wife of Tommie Harris/NFL, Chicago Bears) and a few not-so-notable figures such as myself, my sister Dori and Dave’s niece Kim.

Bob Gase and Todd Crawford were wonderful hosts and showed us around the track. We also had an opportunity to spend time with Joey in his hauler to cool off and get out of the sound and noise. He’s a wonderful young man and shouldn’t have had to lose his mother at such a young age. I had fun talking racing with him – he may not say the same. 🙂 Dave and I are big NASCAR fans and we have been following him in the Xfinity series and the few cup starts he has had.

This summer weekend race at New Hampshire is always a busy one in the garage area because they have three different series racing on Saturday and the Sprint Cup teams also had several practices, so there were opportunities to see a lot of on-track action. We enjoyed some of the Whelen Modified race and got to see the end of one of the cup practices. With the pit access we had, we were able to get close to some of the cars and drivers on pit road. Dave snapped a photo of Jack Rousch and saw Richard Childress walking by. We’ve been to three races at NHMS before, but this was a different experience for sure.

The pit and garage areas are regular hives of activities throughout the day and one needs to be aware of your surroundings. Many carts, cars, gas cans, and groups of media moving back and forth between the garages and trackside. I was run into on pit road during the modified race because I had ear plugs in and he couldn’t stop the large cart. He hit me gently and did apologize and we had a laugh.

The weekly circus that is NASCAR is amazing. The logistics and organization that goes into each team and just getting the event produced is impressive. And then add to that the wonderful staff at New Hampshire Motor Speedway who could not have been nicer. A stellar group of people and a lot of fun.

We were able to take many photos with Joey at the car before the Xfinity race as well as stand next to the car during opening ceremonies and the singing of the anthem. Something I’ve only seen on TV previously, or in the stands. This perspective was a lot of fun and It was emotional to be standing next to the car and see our loved ones there with us.

Then after the anthem was sung Joey’s dad led us over to the team’s pit area and informed us we’d be sitting on top of the pit box for the race! Now THAT was very, very unexpected. We weren’t really sure where we’d be to watch the race, but I hadn’t even thought about the actual pit box that is wheeled over from the hauler. It was a tight fit, but Todd, Dave and I climbed the narrow ladder to the three chairs for us. What an amazing view for a race! Dave and I geeked out a wee bit I think.

The sounds and smells of the cars racing by and coming in for pit stops is either something you love or hate. I happened to be one of those people that loves it. My sister Dori and I always used to go the demolition derbies at our local fairgrounds every year until I moved to Maine in 2001. She was also a NASCAR fan back in the day and I truly felt her with my on top of that pit box geeking out with Dave and I and enjoying the event immensely.

Joey didn’t qualify for the race very well, but he move up during the race and finished a respectable 25th place out of 30 cars. He is a good driver. He doesn’t ruffle any feathers on the track and hasn’t caused any fights on pit road or in the garage area (that I’m aware of!) and I think he has treated other drivers with respect. Again…respect breeds respect. I think the two media pieces produced by NBC Sports about Joey over the weekend were a reflection of the kind of young man he is and how he has taken something that is very painful and is helping others. It was a pleasure to meet Joey and his dad and we will continue to support him and cheer for him on a weekly basis.

It was a special, special day at the track and it was wonderful to get close to the action. As a double brain aneurysm survivor, I took great pride in having my name on the car and hoping the words “brain aneurysm” have now entered into the vocabulary of the NASCAR community in a bigger fashion. There are a few people who have even effected within the NASCAR family and we know they’re going to be helping TLCF help raise awareness and make the public more aware of the symptoms and their own personal stories.

Thank you to Todd Crawford and The Lisa Colagrossi Foundation for making this day possible. We look forward to future endeavors and helping to save lives.

  • View photos below and visit our Facebook page for more photos at: KAT-Walk & Karo5k