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… More
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.
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.
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.
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.
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.
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).
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.