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.

Two-Year Checkup 2018

I had my two-year MRA last weekend. Another trip down to Scarborough. This time on a Saturday afternoon, which was unusual and nice. Less traffic and great parking! My choice of music was 80’s pop and the whole thing took less than 20 minutes. Bada bing, bada boom. They used a combo of ear plugs and then placed ear phones over that. So, the sound of the MRI machine was significantly muffled. Nice!

It’s amazing how your mind plays with your emotions during that period of waiting. Especially when a potential vacation could be derailed if things have changed dramatically and I was told not to fly. A lot was riding on my brain and it had been a longer stretch of time between checkups.

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So, today I finally got the results back and this report was good. Nothing had changed from two years ago and we’ll do it all again in two years. (2020!) I still have that remnant of blood getting in to the neck of my first brain aneurysm, but the fact it stayed the same is good. Do I think I’m free and clear of ever having any other issues? No, but for now…I’ll take it. And I’m glad I didn’t have to endure ANOTHER angiogram. I’ll have to go back and check out my blog to see just how many I have had since 2006.

I’m still a survivor.

Look out Scotland & Northern Ireland! Here we come!

SaveSave

Seize The Day?

The Latin saying Carpe diem means seize the day or live each day to the fullest.

Do I Carpe diem? If I’m honest, no I don’t. Being a double brain aneurysm survivor, I SHOULD seize each day, but I don’t. Am I grateful? Of course, I am.  Do I wake up each morning and think “I am so grateful and blessed to be here”? No, I do not. I should…but I don’t. And those people who say they DO wake up each morning and actually think about how blessed they are, the skeptic in me thinks, “Really?”

MY first thoughts every morning are that I’m very tired, or my back or head aches, or that I slept far too long on my left side, which is a bad thing because of where my craniotomy is. No, my first thought usually isn’t how grateful I am.

I wish I could live each day to it’s fullest and feel grateful every day. Although I am one of the fortunate ones who still can, I need to work to pay the bills and secure good health insurance. I think more about those things. And I do more work than Carping that diem.

What I DO think about every day is brain aneurysms. How can I not? I think about my own aneurysms and the issues I still face. I think about the paths people’s lives, not just mine, have been forced to take as a result of brain aneurysms.

The parents who has lost a child. The husband who has lost a wife. The child who has lost a mother.  All of those people I have met and they are a part of my life now due to our shared experiences of losing a loved one to a brain aneurysm.

Brain aneurysm survivors are also a part of my life. We share a bond. We share our fears. We share our frustrations and scars with one another.

I’m not crazy about the month of October, so I’m always happy when I make it through the month. It’s VERY stressful at work in October and my family history has many sad occasions and memories that have happened in October. I suppose I should be grateful the month goes by in a snap…suddenly it’s November. It’s cold. All of the colorful leaves have fallen off the trees. One of these years, I WILL get to the mountains of Maine, stay in a hill-top cabin and view the fall foliage. Something I have yet to do since moving here in 2000.

September is the month when I FEEL the most grateful for being alive and being able to share my brain aneurysm story and help anyone I can. It’s the month chosen for our annual walk and run to honor the lives of two beautiful young women taken far too soon by ruptured brain aneurysms.

Then that pesky cynic within me thinks…I’m pretty sure no one I know would have organized a walk or run in MY honor. That’s how loved and adored these two young women were and how many friends they had. I couldn’t even get one person to visit me at home during both of my recovery periods….which were 6 and 3 months respectively. Yeah…I’m pretty sure I would have still remained just part of the statistics had I not survived. Which makes MY survival even more difficult to take. Why did these two young, vibrant, popular women have to die and I’m still here? I guess it’s to share my story and theirs. Lucky me? I’m grateful? Yeah…sometime’s it’s very difficult to feel that.

BEING grateful every day is a given in my case. If I wake up…yeah, that’s good! FEELING grateful is a whole other animal and it hits me at moments, rather than an every day thought.

I remember feeling grateful at the end of October when my devoted husband and I pulled into the driveway after two weeks in the hospital after my rupture in 2006. Although I wouldn’t return to work for another six months, it was a relief to be home. I was grateful to see the inside of the house I had come to love and to pet my kitty cats again.

I was overcome with emotion that following spring when I walked out to my garden for the first time and it hit me that things were starting to come alive again, as they do every year and that I was grateful, lucky, and blessed to be able to see my garden again. To smell the wet soil. Feel the wind on my face. Yes….I WAS grateful and very emotional as a result. It could have all ended in early October for me.

I feel grateful every September during our annual photograph of brain aneurysm survivors at the KAT-Walk & Karo-5k. I am grateful to be alive and to share this photo with other survivors from all over the state of Maine, New England and the country. I FEEL those moments tremendously.

It’s far too easy to assume someone who survived a life-threatening illness or medical emergency is grateful and lives each day to the fullest. Many don’t have the luxury to do so. Many have such horrible deficits that just living each hour is a struggle. Do they have time or the capacity to even THINK about being grateful? I doubt it.

Without even knowing it, I do believe I am grateful on a daily basis. I can rattle off a list of the things I am grateful for. It’s that seizing the day thing I still have to work on. I’m very tired.

 

So Many Stories

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