And the Stories Continue

Five years ago I wrote, what I contend, is one of my more poignant blog posts about all of THE STORIES I have heard about brain aneurysms. Stories from many different people from all walks of life and at very random times. We heard a new one last week.

As my husband and I were in the pre-op area at the hospital waiting for his colonoscopy to begin, the anesthesiologist came in to speak to Dave prior to the procedure, which is normal. As Ron was talking he noticed the brain aneurysm survivor pin that was on my purse and Dave’s KAT-WALK bracelet and asked who was the survivor.

We proceeded to share my story, which was top of mind for both of us because it was 16 years to that day, that I had suffered my ruptured brain aneurysm. Then sadly, Ron told us HIS story about losing his wife to a ruptured brain aneurysm 12 years ago.

Suddenly Dave and I were no longer patients Ron needed to tend to during his daily routine prior to the procedure, but human beings who had both suffered losses due to this horrible disease. Ron leaned over and rested his elbows on the metal railing of the hospital bed and proceeded to tell us the sad story of his wife, his children’s reactions, the day it happened, the treatments involved at the time, and the tragic outcome.

Obviously, for Dave and I, we could relate to Ron’s pain and the suddenness of losing someone to a rupture brain aneurysm. Ron even mentioned meeting someone else who survived and how that person had survivor’s guilt. I too, have suffered from that.

Dave wears his KAT-Walk hat and bracelet almost daily and I always have my survivor pin on my purse. These pieces of “swag” can result in moving stories of sadness and triumph from complete strangers. Stories we never would have known had they not seen the small trinkets and asked about them.

Five years ago I wrote that blog post because of the anniversary of my sister’s death. This year was the 10th anniversary of her death. 16 years ago last week, I celebrated my annie-versary of my rupture. That is MY story, but there are so many others out there and we continue to realize the importance of sharing them.

Ron congratulated me for surviving multiple times and said I “looked great’, which was very sweet considering he had never met me before and had just shared, what I am sure, was not an easy story to tell. We shared our sympathies with him and thanked him for taking the time to tell us about his wife.

All of these stories are meaningful. All of these stories effect us. And all of these stories get added to the long list of people we have met over the years who have been effected by brain aneurysms.

Words from the Past

I have been de-cluttering lately. Throwing out, or donating things that I haven’t used or looked at in years. If it doesn’t hold a strong, personal attachment, why keep it? The person who will have to clean up after I’m gone, won’t know if it was meaningful or not…or even care. If it’s taking up space and there is no sentimental value…get rid of it. Quite liberating.

Today’s wee task was a small basket filled with greeting cards. I remembered they were mostly “Get Well” cards from my craniotomy in 2014, but also forgot it was shortly after the loss of my other sister Rhonda. So, there was a mix of sympathy and get well soon cards. Odd.

Many were from co-workers, distant friends, and relatives who had heard about my surgery. Some were very poignant and meaningful and others were funny and distracting.

One such card was from my own mother. She always found THE best cards. Once card I received while recover in the hospital from my ruptured in 2006, was the perfect card for me. A painting of the sun sitting in a bath tub — one of my favorite pastimes. The writing on the outside simply said “The Sun’s Day off”. I have it framed in my office at home.

The card I stumbled across today from this surgery was so MOM. Funny, unexpected, and unique…just like she was. Even more shocking was the expletive inside. 🙂 But I LOVED it. It made me smile and laugh then, and it did so today when I reread it.

Little did I know that just 9 months later, I would also lose my mom. So, finding these cards is very, very bittersweet, but this one made me smile and laugh out loud! I “had fun” with this card, which is what she always used to tell us. God, I miss her.

Since that time in 2014, two of my co-workers have been lost due to cancer. Both were devastating blows and they were taken far too soon. Seeing their names and words was moving especially knowing how they would both struggled with their battles against the horrible diseases that overtook their bodies. I hope I was able to give them the same kind of support and comfort they gave me.

One such card was a beautifully penned, simple note from our photographer John. My sister Rhonda has just passed away and he had read about it on my brain blog. He comes from a large, loving family and his words about pain, loss and family meant the world to me then…and still do today.

I vividly remember that day like it was yesterday. I came to work and found a small orange envelope sitting on my desk. As I opened it and read John’s words about losing my sister, they hit my like a ton of bricks. After my eyes welled up with tears, I immediately walked over to his cubicle, thanked him for the card, and we hugged, held each other, and cried together.

John was also dealing with his own demons fighting cancer. Knowing how precious the time we have on this earth is, for him to take the time and acknowledge the pain I was going through while he was enduring his own fragility being the father of two young girls, meant even more. I miss him every day at work. He was a special, special human being.

All of these cards gave me strength when I needed it and gave me strength reading them again. Grief and healing went hand-in-hand during that period of my life. Neither were easy. I struggled with proceeding with the brain surgery such a short time (2 weeks) after losing my sister. I didn’t want to put my mother and my niece through anymore worry and pain. THEY were the ones who told me to go forward with the risky surgery. And it turned out it may have saved my life.

I thank those who sent cards. No one visited me at home or in the hospital, but the cards meant a lot and made me feel less alone in the world – even for a short time. THANK YOU!

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.

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.

2018 for website - 001

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.