It’s Show Time!

Because this is MY blog and I can write whatever I want, allow me to toot my own horn for a wee bit.

For many, many years, we have tried unsuccessfully to reach out to local print & television news outlets for coverage of our organization’s efforts to raise brain aneurysm awareness in the state. We have provided stories to the right people at the right times, but there has never been coverage of our annual KAT-Walk and Karo-5k.

Last summer we FINALLY received some television love after I responded to a local news reporter’s story on Twitter. She immediately responded to my reply and Dave and I ended up hosting the reporter in our home for a short interview and two very short spots on the local news station that evening.

NewsCenter Maine Video 1 — WATCH NOW

NewsCenter Maine Video 2 — WATCH NOW

A few people saw these videos and commented and we have no idea of knowing how many people actually saw the report and subsequent videos on social media, but if one person saw them, listened to what we said, and went to the hospital to get checked, it was worth it. We haven’t heard if anyone came to our KAT-Walk & Karo-5k as a result of watching the story either, but we still want to get the word out there.

When Mira, one of our committee members who lost her 27-year old daughter Karolina to a ruptured brain aneurysm, was trying to solicit sponsorship funds for our walk & 5K last year, she met a Portland, Maine lawyer. Derry Rundlett offered up his services in the form of impersonations of Elvis and Jerry Lee Lewis at our Dance for Awareness event in March, in exchange for a television appearance on his monthly cable show in Portland.

Derry is 75-years old, full of energy, and was extremely generous with his time and money at the dance. His performances were great fun and fit in perfectly with this year’s Rock n’ Roll theme!

Dave agreed to be on his show some time in April. He asked me to be a part of it as well, so we drove down to Portland, met Derry for lunch, then walked over to the studio to film the 25-30 minute show.

Because Dave and I have spoken to so many groups and organizations about brain aneurysms over the years and how we came to be involved with raising awareness, speaking to Derry came naturally, it was just in front of cameras and in a studio this time. Neither of us were nervous but we certainly wanted to make a good impression, represent our organization well, and raise awareness about brain aneurysms. I think we were successful on all counts.

We had a rough outline of the show, but weren’t aware of exactly what questions Derry would be asking us.

Watch the Derry Rundlett Show about Brain Aneurysms in Maine

WATCH SHOW – approx 25-30 minutes long

Although I have spoken to many people about my own experiences with brain aneurysms as well as about my sister’s death from one, for some reason after this taping I was quite sad and subdued on the drive north back home. Dave and I chatted a little bit, but I really wasn’t in the mood to chat. I have yet to figure out why talking about it on this specific day and in this arena made me sad. I suppose it just “hits me” on some days. I also think because Derry expressed such an interest and appeared to be deeply touched by our stories and our efforts, it rubbed a nerve/emotion that had been resting comfortably for awhile.

And, as usual, I don’t hear much feedback from my friends or co-workers when these shows are brought to their attention, which also depresses me. I need to stop expecting that support. If I stop expecting it, then I won’t be so disappointed when it never comes. You’d think after 12 years I’d learn….oh, well. You can lead a horse to a computer or cell phone, but you can’t make them watch things, right???

The Families

Since 2006 when my first brain aneurysm ruptured, Dave and I have come in contact with hundreds of families effected by brain aneurysms not only in Maine but throughout the country. Although some friendships and communications have varied in frequency as they have weaved their way through our lives over the years, their stories remain with us.

We shared last nights annual Dance for Brain Aneurysm Awareness fundraising event with many of those families. Today, I am reflecting on just how vast the brain aneurysm community is. Not only do Dave and I have contact with survivors and those who have lost a loved one, but we have met and become involved in the lives of their family members as well.

Learning how brain aneurysms effect an entire family is a part of OUR lives through the work we do with our group and each story effects us.

Last night I danced for the first time with a fellow survivor we’ve known for several years. He is a walking miracle. His recovery from a severe brain aneurysm rupture is remarkable. Learning to walk again, overcoming dramatic emotional struggles, and a memory pathway that is forever changed. I’m pretty sure I never stopped smiling while dancing with Dan for many reasons: he is a survivor, he is a fantastic dancer, and we have gotten to know his wife and young children. We know his life now. He is a part of our extended brain aneurysm family.

Everyone’s struggle is different, but the cause is not. Brain aneurysms can rip a family apart or bring it closer together. Dave and I have experienced both of those results with many of the people we have met and as a result we also begin to care and worry about their family members. We now know their children, their siblings, their grandchildren, their parents, their co-workers, and even their pets.

Some people have a massive amount of support from family and friends while other’s are not as fortunate. We hope those who don’t have that larger support system feel a sense of community and encouragement when spending time with others at our events. It’s vital we show them they’re not alone in their struggles.

With relatively new “family” member and brain aneurysm survivor, Carol.

The date of our annual Dance for Awareness is not by accident. The birthdays of two young women lost to ruptured brain aneurysms fall around this time: Kim Tudor, Dave’s niece, and Karolina Kurka.

Karolina’s family, during a time of intense grieving, came to our walk only a few weeks after losing Karolina. Since then, their family has joined ours in raising awareness and bringing their friends and extended family into the fold.

Each year after the dance, a small, solemn, informal ceremony takes places outside in the parking lot. A release of balloons, in the colors we use to represent Kim and Karolina, are released to the night sky into the heavens to honor them both on their birthdays. Some years it’s a small group, other years, it’s a larger group, but it’s always meaningful to the family and friends of these two young girls taken far too soon. This year, Kim’s mom Nancy, and Karo’s mom Mira, released the balloons.

One shouldn’t be afraid to celebrate the lives of those lost. It is very easy to let the tragedy and grief of their deaths overshadow the joy of the years we DID have with them.

I thank all of the families of those we have met over the years for inadvertently reminding me that it’s okay to remember the family members I have lost. It’s okay to celebrate their lives through OUR lives and it’s okay to allow someone else to love you and support you. THANK YOU!

A Needed Break

Dave and I are always thinking….thinking about brain aneurysms. They have been a part of our daily lives since 2006. We raise money, we produce print pieces, Dave creates banners and maintains all of our Facebook posts. I do Instagram and Twitter posts and maintain the website. We help with the monthly support group and we’re always trying to raise awareness for brain aneurysms.

So,  it was odd when after our first real vacation in five years, I realized that we never discussed brain aneurysms in that three week period. I think the only time I thought about my aneurysms was on the flights, but for the most part…it was a three-week break from brain aneurysms.

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At a beautiful waterfall in Scotland

It was a very welcome break and one we needed to recharge and discover the world outside of our little Maine bubble. And we loved it! It wasn’t until the last week of the trip we even turned on a TV and it wasn’t to a news channel but local UK home & garden programming.

Because we were gone last month, we missed last month’s brain aneurysm support group meeting. Tonight we attended as usual and welcomed some new faces. I’m again reminded at the important work we are doing. And I’m also reminded that what’s most important to us (Dave and I) is the human contact and helping others…not the money. Yes, the money is important and it’s helping to fund important research, pay for event costs, and student scholarships, but it’s that one-on-one support and comfort we can give to others that is certainly the most rewarding.

The break was great and it was needed, but I’m pleased with how Dave and I are spending a good deal of our time…helping others when and where we can.

I Hope You Dance

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.