Brain aneurysms brought us together, friendship keeps us connected.
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.
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.
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.
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
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.
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.
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 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???
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.
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!
Dave and I had dinner in Gorham, Maine tonight. Why would we drive and hour and a half just for dinner? Here is why.
A friend and former member of the Maine Brain Aneurysm Awareness Committee was in need of support. Her parents, husband, and children needed to feel the love of family and friends.
Jess joined the committed after losing her best friend, Karolina Kurka to a ruptured brain aneurysm. The annual Karo-5k was named in Karolina’s honor and Jess was a huge advocate for raising brain aneurysm awareness and making sure Karolina’s memory lived on.
It was also through this awful loss that Jessica became educated about brain aneurysms and the importance of getting yourself to a hospital for a scan if you’re having issues. It was due to Karolina, that Jessica went to the doctor after suffering severe headaches.
In 2012, thinking she could possibly have a brain aneurysm herself, Jessica and her young family were instead stunned to learn she was diagnosed with astrocytoma, an aggressive brain tumor/cancer. The tumor was surgically removed at Maine Medical Center by Dr. Florman, one of the two surgeons who assisted with my own craniotomy and brain aneurysm clipping in 2014.
After successful recovery and treatment, Jessica continued to thrive and enjoy life with her husband and two young sons until five year’s later in December of 2017, her tumor/cancer returned.
In early 2018 the new tumor was removed surgically and she endured 30 radiation treatments and chemotherapy.
In May, an MRI revealed the tumor had grown back and although it was not curable, it was treatable.
In June, Jessica celebrated her 34th birthday and in July, Jessica had her head shaved. Her mother, in a touching show of solidarity, shaved her’s as well.
Dave and I joined their family here in Augusta for the Bob Burn’s Memorial 5k/Walk for Brain Tumors where it was wonderful to give her a hug and show our support.
In August another MRI revealed a 2nd tumor had developed in an area in the back of the brain that effects balance and movement. Devastating news and new immunotherapy radiation was scheduled.
And then a follow up MRI in October showed more tumor growth and their family made the heartbreaking decision to cease further treatment.
Tonight Dave and I attended a fundraiser in Gorham for the family. It was wonderful to see such a large turnout at the elementary school to lend their support both monetarily and emotionally. Children playing, people laughing and LIFE.
Jess is struggling, but doing amazingly well considering everything that she has had to endure. It’s very difficult to know what to say. I did tell her we loved her. I hope that is enough to give her some comfort. I can’t imagine the overwhelming feelings she and her family must be enduring right now. Especially during the holidays.
You are BRAVE Jessica. You are LOVED.
I wish this wasn’t happening to your family, but I DO know you’ve shown us all how to endure. Your strength and bravery will guide your sons going forward. Let the love and support you’re being shown right now give you comfort and strength. We love you.