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.

It’s Bigger Than Us

As we prepare for our 11th KAT-Walk & Karo-5k for Maine Brain Aneurysm Awareness this Saturday, we need to remind ourselves it’s not about the amount of money we raise, but about the families we touch.

Our walk/run is a place for survivors to gather and share our common bonds and similar experiences as we continue to heal and it’s a place for those who have lost loved ones to comfort one another and know they’re not alone.

If we’re able to share our stories with others and speak to everyone who will listen, a life could be saved. That’s what it’s all about…it’s much, much bigger than us.

Here is a short video I produce with photos from our event LAST year (2018).

Plates, Screws, and Dents

I have often referred to the hardware in my brain as my “brain bling”. It’s not a term I came up with myself, but stole from another survivor. I’ve always considered my brain bling to consist of my 16 coils plus 4 more, 1 stent and 1 clip: Basically, metal that is keeping me alive.

The black blob is my 20 coils and there is a stent in there somewhere. The clip on the 2nd aneurysm can be seen to the right.

But wait, there’s more! I keep forgetting I have more metal in my head in the form of the plate and screws used to hold my bone flap in place.

The 20 coils and stent came first, then the clip via a craniotomy came after. A craniotomy is a type of surgery that removes part of the skull (a bone flap) to access the brain underneath. When the procedure is complete, neurosurgeons put the bone back in place and secure it with tiny plates and screws.

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Simulation of the plate and screws securing the bone flap

With my fingers, I can feel the plate and screws under my skin, and at certain angles and lighting they’re very visible sticking out slightly under my skin. The much more visible aspect of most people’s craniotomies is the “dent” or a skull compression that can occur.

The dent is a common occurrence due to the refitting of the bone flap. It is impossible to reattach the bone flap for a snug fit, for any number of reasons. Therefore, a space is created between the two bone surfaces and fitted as closely as possible. The bone is reattached and secured with the plates and screws to ensure very little movement and easy surgical access if it is necessary. However, the piece of bone can shift slightly and create that indentation.

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The dent

They can use synthetic fillers to restore the normal contour around the dent, but I have opted not to have it. It just makes me nervous having something injected around that area. I pretty much try to cover my dent with my hair. I’m not horribly self-conscious about it (if the wind blows my hair up….THERE it is!), it’s just not that attractive. So, as long as I have bangs, why not use them to cover it up, right?

My Actual Brain/Head Bling Count:

  • 1 Titanium Plate

  • 2 Titanium Screws

  • 1 Titanium Clip

  • 1 Stent

  • 20 Platinum Coils

And no, I do not set off the x-ray machine at airports.

Here is a short video clip I took a week after my 2nd brain aneurysm was clipped back in 2014.

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???