Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.

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.