Those Left Behind

Last Saturday we held our 11th annual KAT-Walk & Karo-5k. For the first time in 11 years, we had weather. Granted it could have been much worse. The remnants of a hurricane came through the weekend before. We were lucky to only have some brief showers, clouds, and wind.

I think the gray, damp, cloudy weather reminded me of the reasons the walk was originally started. Dave’s niece Kim died of a ruptured brain aneurysm at 32 years old and her close friends and relatives started the KAT-Walk in her memory. It was named after Kim using the initials of her name: K for Kimberly A for Ann and T for Tudor. Her loss was felt so deeply by so many people and it weighs heavy on their hearts on this day.

My heart also bears the loss of my sister Dori on this day, who we lost to a ruptured brain aneurysm in 2012. I was very close to Dori and I miss her every day. I miss her laugh, her smile, and her joy for life.

Each year, our group continues to reach more and more families who have been touched by brain aneurysms. Their voices and pain join our choir as we come together and sing as one community in raising awareness and comforting one another.

It’s those stories that Dave and I add to our memory banks and emotional cache. The loss, the struggles, the victories, and the heart-wrenching tragedies are now apart of our own. What started as an event to honor the memory of our sweet, dear Kim and a place for each of us to project our grief, has now turned into a community gathering place from around the country.

As we celebrate and congratulate those who have survived, myself included, the lives of those left behind and their struggles to live life without those loved ones have also become our concern. Grief has no time table. There is no right or wrong way to deal with grief. You will be fine one day then out of the blue, in a location that has no connection to your love one, you can be overcome with emotions as strong as the day you lost them.

A ruptured brain aneurysm can strike at any time, any place, any age, any race, and both men and women. Often times there is no planning. No plan of action to avoid it or a way to prepare. Which is why we do what we do…if you’re lucky enough to have symptoms a brain aneurysm can be fixed. A life could be saved. A family could avoid going through heart-breaking loss or years of caring for one who survived, but with serious disabilities.

Today we participated in the Nolan’s H.E.R.O. Foundation 5th Annual 5K Run & 3.13K Walk in Pittsfield, Maine. Nolan Berthelette died from a ruptured brain aneurysm at only 14 years old. A heart-breaking and devastating loss for his parents Ray & Amy, his siblings, and the community. Parents losing their children is always difficult, but one so full of life and with so much more life left to live is especially painful.

I have attended four of their five events for Nolan, but for some reason today I was feeing Nolan with us. I can’t explain why. I just felt him there and he was saying he’s “Okay”.

It’s so hard for those of us left behind to continue life without those we love. Literally picking up the pieces. Finding our new “normal”. Reinventing family traditions. Finding ways to move forward and live without feeling guilty when we’re having fun without them.

Each year at our KAT-Walk & Karo-5k, I feel Dori & Kim. Some years more than others, but I know they’re there walking with me. One year we had a spectacular rainbow greeting us. One year, I had a butterfly traveling along side me while I walked the trail.

Dave’s niece Kim and my sister Dori

For those people like me, who have not only lost a loved one to a brain aneurysm, but also survived one as well, it’s a double-edged sword. I certainly know I had survivor’s guilt. Why did I survive and Kim and Dori did not? Kim who was so young at 32-years old and still had a long life of milestones yet to reach and Dori, who would not see her 15 year old son reach his 16th birthday. Why them and not me? There is no answer to that question. God may have had other plans for me, but I’m certainly not happy about it.

So, for two weekends in September…those left behind are continuing to struggle with loss and heart-ache, but we’re trying our best to move forward and honor those we have lost in a constructive and meaningful way. We remember. We feel. We DO something and try to honor them by hoping to save others.

I think they would all be proud of us…those left behind to carry on.

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!

Paws to Pause

For many who attended our 10th annual KAT-Walk for Brain Aneurysm Awareness yesterday, they probably did not catch the significance of a special moment for our family personally.

Because this was the 10th anniversary of the KAT-Walk named in honor of Kim, Dave’s niece who died from a ruptured brain aneursym, there were some special moments dedicated to Kim’s memory yesterday. One of those moments was the start of the walk.

The start of the FIRST KAT-Walk in 2009 was lead by Dave, myself, Kim’s mom Nancy, and Kim’s pug, Bella. Bella has been there to lead every KAT-Walk since Kim’s death, except yesterday because she passed away earlier this year after a long battle with illness.

Bella the dog leading the 2009 KAT-Walk
Bella leading the 2009 KAT-Walk

A month ago, our brain aneurysm group was lucky enough to be a featured community organization at a Portland Sea Dog’s game. The Sea Dogs are a double-A minor league team for the Boston Red Sox. As a part of our efforts that night, we had asked if their mascot, Slugger the Dog, could attend our KAT-Walk & Karo-5k to add some special local flavor.

Slugger showed up and had a lot of fun with those in attendance. Earlier in the week, I had suggested we start the walk with Slugger taking the place of Bella since it was the 10th year of the walk. Dave thought it was a great idea and Slugger helped Nancy and I hold the original banner created by Dave for the first KAT-Walk to start the walk.

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Carrying that banner with Nancy was sad, but also a proud moment because of the work we have done in Kim’s name and for those touched by brain aneurysms.

Times are changing.  People move away. Pets pass away. Our committe members are getting older. It gets more difficult to find willing, and physically able volunteers each year to produce the kind of event we want to provide the brain aneurysm community. But the hard work is worth it when hundreds of people show up to support each other and our efforts to raise awareness.

THANK YOU to everyone who attended and/or donated this year. We could not do it without YOU! And thank you to Slugger and the Portland Sea Dogs, for providing some comedic relief and a helping paw in a special moment.

 

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.