Tonight was my first time back to our brain aneurysm support group meeting since probably last September, possibly August. During catalog season I’m always working late and far too tired to go anywhere during the week. Ironically, fatigue and memory is a common theme at many of our meetings as it was tonight.
As always, it was good to see returning faces and I missed a few who weren’t there. We’re getting a nice “core” of survivors, care-givers, and those who have lost loved ones. The support is always there and we all try to listen to each other’s stories and offer validation for feelings and emotions that only those who have gone through the same thing can appreciate.
Unfortunately, I’ve had the brain aneurysm double-whammy; I myself, have suffered a ruptured brain aneurysm, and I have lost two loved ones to ruptures. I’ve seen both sides of the caregiving aspect, or those left behind, and I’ve also been a part of the survival and recovery part. Each part has struggles and pain.
Tonight, a father shared the story of the night his adult son’s brain aneurysm ruptured. It was a violent rupture and if he had been home alone, he would not have survived. His wife was able to revive him briefly – twice. He survived surgeries and a little bit of rehab and multiple rounds of different medications. He was at our meeting tonight while his father described the night it all happened to us. Even though his short-term memory has basically been lost, he cannot work or drive, and his family continues to endure a level of frustration and pain I cannot even begin to understand for several years now. But he IS alive, walking, talking, and able to function in some capacity.
Hearing a caregiver, and a father, talk about what happened that night, was difficult for me. My sister and Dave’s niece went through very similar experiences….or we can assume. My mind immediately raced to Dori’s rupture and how she lost consciousness on Mother’s Day and her husband was able to revive her while their 15-year old son called 911. But by that point it was too late. The damage from the rupture had already been done.
Then I thought about Kim, who was home alone when her rupture occurred. I can only hope and pray it was quick, but I also always wonder if someone had been there and found her sooner, if she’d be here today and if she were, what kind of life would she be living. The severity of her rupture and the location of it, leads me to believe Kim would not be the same person if she had survived. The same can be said for Dori.
We witnessed tonight the amazement in seeing a survivor of such a devastating rupture, but also the heart-wrenching pain in knowing their loved one will never be the same. That they can no long take care of themselves or their children. That they need major supervision. That they need to be reminded of things on an hourly basis to get through the day…yes, they DID survive, but in a sad way, they’re only a shell of the person they once were.
Is it only by the grace of God, that I am here today? Why did I survive and they did not? Why did I survive with very few deficits when others have continued issues and pain, even years after their ruptures?
I don’t like it when I come away from one of our meetings with these kind of questions. I should just be grateful and keep my mouth shut and never complain about anything, ever again. I AM one of the lucky ones…or one of the chosen ones…or just a person who was in the right place at the right time, with the right set of doctors. Fate? I don’t know.
I suppose those are all questions that will have to remain unanswered. Kind of like “Why doesn’t Fred Flinstone have horribly bloody feet when he has to stop his rock car with his heels?” Why? Why?
The 2015 KAT-Walk & Karo-5K for Brain Aneurysm Awareness was held this past Saturday and the weather Gods, or at least our angels we call Kim & Karolina, were on our side.
The gentle rising of a hot air balloon greeted us.
We arrived at the Back Cove to see the sun come up, and as we were unloading the trailer, I noticed a hot air balloon slowing rising above the horizon across the bay. I had to stop and take a photo as I didn’t know which direction it was going. Thankfully, it glided right over our location and provided a stunning view of the extremely colorful patterns. It was fitting the bright colors were in our array of colors; the teal blue for Kim, the red for Karo, the orange for Nolan and blue and white for Scotland! 🙂
We were extremely blessed by warm, but not hot temperatures, low humidity, no rain and light winds. Some years the high winds can cause major issues with the tents, printed collateral, and flags.
The event was physically moved down to a location along the trail that allowed us to see more of the people involved. The previous years we were set up in a row along the gravel trail. Last year, we had no idea there were over 600 people there until the 5k started and they all gathered in one place. Once they registered, they became all spread out until that point. This year, our hope was to provide an area where the teams, families, and friends could gather and continue to be a “part” of the day with everyone else. I think we succeeded in that respect and some very positive comments were shared.
I’m usually set up in the Brain Aneurysm Awarenesstent and get to meet survivors & their supporters who are new to the event and welcome those who have returned. We also try to provide comfort and support for those who have lost a loved one. I know we celebrate those who survived, but we also try to remember the reason many of us are there is because we lost a loved one to this silent killer. We did have a tender moment of silence to reflect on those lost in the opening ceremonies and many people use the honor board to gather and take picture’s with their loved ones sneaker.
Another good thing about moving the venue location was having the Start/Finish line directly in the vicinity of our tents. Those who finished early, could continue to be apart of the event and still cheer on those who crossed the line because it was right there.
Because Dave is so familiar with so many of the families and participants through his direct personal contact with them, he knows so many of the runners, walkers and their supporters. So, as he started to see some of them come across the finish line, he grabbed the microphone and started announcing them. I think that added a real special, personal touch. I know it was nice to have my name mentioned as I crossed the line all by myself again. Heidi McCausland….team of one!
The Board of Honor where sneakers with a survivor’s name or one who was lost are placed.
Usually the most heartwarming and heart-wrenching parts of the day are when we meet random people who are coming to the event for the first time and are reluctantly coming to the tent to read more about brain aneurysms and who want to write their loved one’s name on a sneaker to add to our Honor Board. I met one women who was there to walk for her best friend whom was lost 6 years ago. This was her first time there and it was very emotional for her. I hope participating in the event and honoring her friend in such a way helped comfort her.
I also met another woman who had lost her sister two years ago and was just walking by and saw the signs for the event. She didn’t participate in the event, but came to our tent, signed in, made a sneaker out for her sister, and took a brain aneurysm awareness bracelet. No matter how we reach out and connect, it’s all important.
Last year’s event, which raised a record amount of money, helped fund a $25,000 Chair of Research through the Brain Aneurysm Foundation. The recipient of that award made the trip to our event to honor US and to participate. Not only did Dr. Kimberly P. Kicielinski make the trip from Alabama, via Houston, then Boston, but she participated in the 5K, received honors from our committee, made a speech, and then she and her boyfriend Justin helped tear down the event afterwards and joined us for an after-event party.
The work Dr. Kim is doing is very important. She is trying to determine the thickness and fragility of artery and aneurysm walls. Exploring this issue could result in saving many lives. If doctors are aware an aneurysm is at higher risk of rupturing due to a weakness in the wall structure, they could act and operate and save a life before a potential catastrophic rupture occurs. Dave had some wonderful communications with Dr. Kim via email prior to meeting her in person at the event and things she said and obviously has done and is doing, really struck a chord with our entire committee.
For me personally, after my 2nd unruptured brain aneurysm was clipped in January, 2014, the doctor said we dodged a bullet because the aneurysm itself was very oddly shaped and had a weak point at the top of it: something they weren’t able to determine UNTIL they opened up the skull and had physical contact with the aneurysm. Dr. Kim’s work could provide that information before they go into the skull. If I hadn’t made the preventative decision to have that surgery, it could have killed me…and sooner, rather than later.
I left the shade of my tent to participate in the 2-mile walk this year. I walked alone again. Many people pass me, some are way behind me, but I finished and was proud. I walked for myself, my sister Dori, Dave’s niece Kim, for my fellow survivors who couldn’t join us this year, Lori & Julie, and for all those who don’t have the support of co-workers, friends, or even family members.
The trail is a beautiful spot for a walk/run and Dave is always insistent that there be high tide during the event to provide the best possible view. Trust us…you don’t want to be walking there when it’s low tide. LOL Just not pleasant. The flags were waiving, the surf was light and the seagulls were chattering away.
Two special guests were Christine Doherty Kondra and Alison Sedney from The Bee Foundation, a national organization focused on research for brain aneurysms. It was wonderful they made the trip up from Philadelphia to join us and speaking to them reminded me of how important the national dialogue on brain aneurysm awareness is. So many people don’t know what a brain aneurysm is until they, or someone they love, is affected by it. Alison lost her daughter, Christine’s cousin, on Christmas day to a ruptured brain aneurysm and just like all of us who participate in the event on Saturday, she too, has decided to DO something. The efforts of The Bee Foundation not only raise awareness, but provide critical medical research. It was great meeting them.
Every year we try and try to get some local television coverage of our event. Local news can cover a story such as the new Passy Pete, the lobster that can predict six more weeks of summer, but we’re unable to get them to cover our event? I just don’t get it and it’s very, very disappointing and depressing.
However, this year committee member, and co-founder of the KAT-Walk, Art Piteau, did a wonderful radio interview that aired the morning of the walk on the Derek Volk Radio Show on WLOB radio 1310. We will definitely use this resource in the future and Art did a great job on a subject he’s very passionate about because he adored Kim and was a large part of her life. HEAR AUDIO INTERVIEW>
We were also blessed to have a wonderful article written by Harrison Thorp for The Lebanon Voice newspaper. He was at the event with his partner Martha who was a very recent brain aneurysm survivor having had a craniotomy and clipping just a few short months ago. They both participated in the walk and gave a heart-felt report on the day’s events including the story of one survivor, Deb Hanmer, who is source of inspiration for many of us. It was wonderful to get a new participant’s perspective. READ ARTICLE>
Overall the event was successful in my eyes. We had a tremendous group of volunteers this year which made set up and tear down so much easier and even, dare I say, enjoyable! Thank you to everyone whose tireless efforts provide a beautiful, personal, and productive event. BRAVO!
Unloaded and ready for setting up
The gentle rising of a hot air balloon greeted us.
Floating directly over head
Aneurysm awareness ribbons and bracelets
Stunning day!
Our centerpiece
The Wall of Honor
Excited to be there.
Walkers around the cove
Myself, Christine & Alison from The Bee Foundation
Inspirational survivor, Deb Hanmer
KAT-Walk & Karo-5K Chair of Research recipient Dr. Kimberly P. Kicielinski
“You need to have a compelling story.“ That’s what we’ve been told our group (Maine Brain Aneurysm Awareness) needs in order to get some local television coverage. Webster’s dictionary’s definition of the word “compelling” is:
: very interesting
: able to capture and hold your attention
: capable of causing someone to believe or agree
: strong and forceful
: causing you to feel that you must do something
So, apparently no one feels the following examples are compelling enough to warrant at least one television or newspaper interview in the last 6 years?
A vivacious 32-year old died suddenly in her bathroom of a massive ruptured brain aneurysm three days after Christmas. She lived alone and was found the following morning by her devastated mother. (The KAT-Walkwas created in her memory & honor)
The husband of a ruptured brain aneurysm survivor also lost his niece and sister-in-law to ruptured brain aneurysms.
A woman from New Hampshire was vacationing in Maine and suffered a ruptured brain aneurysm in Shaw’s Supermarket. After a misdiagnosis, she eventually went to Maine Medical Centerwhere the only interventional radiologist in the state saved her life. A few years later, she also survived breast cancer and a double mastectomy.
A man suffered a ruptured brain aneurysm while home alone. After many hours, his young children discovered him after coming home from school. Two hospitals and a trip to Boston saved his life.
A 40-year ruptured brain aneurysm survivor had to be taken to Canada. Â At the time of her rupture, no one in the northeast did brain surgery for aneurysms then. The original clipping failed and she was re-clipped. Which means multiple craniotomies. She is a walking miracle.
A much-loved 53-year old woman died of a massive ruptured brain aneurysm on Mother’s Day after presenting symptoms two previous visits to doctors, leaving a husband and a 15-year old son behind.
A beautiful 28-year young woman, who was an active runner and very physically fit, suffered a ruptured brain aneurysm while working out. She never recovered leaving her family devastated. She was to be married only a few short weeks after her death. (The Karo-5K was created in her memory & honor)
One woman survived a ruptured brain aneurysm that was filled with 11 coils, only to lose her sister to a ruptured brain aneurysm six years later. Then Dr’s discovered she also had a second brain aneurysm which was clipped via a craniotomy, but the original one that ruptured is still giving her cause for concern 9 years later.
A father of three survived a devastating ruptured brain aneurysm. The deficits he and his family have faced are life-altering and difficult but he IS alive and living life to the fullest.
A woman’s ruptured brain aneurysm at 4 a.m. left her with limbs numb, speech slurred, a rapid heart rate, sweating, and falling to her knees. The EMT’s who arrived at her home took her blood pressure and asked some questions. They determined it wasn’t a serious issue and left it to the patient if she wanted to go to the hospital or not. Thankfully she went on her own and the Dr. in the ER sensed what it could be and had her scanned and transported to Maine Med where her life was saved.
A young, talented, 13-year old boy fell victim to a ruptured brain aneurysm in his home. The outpouring of grief and support after his death was overwhelming. (Nolan’s H.E.R.O. Foundation)
I could go on and on if I knew I could accurately describe the situations of everyone that I have met. So many stories of hope, fear, disaster, strength, and courage.
So…apparently none of those stories are compelling? How many people have to die and suffer debilitating deficits before this cause it compelling enough to the local news media? To those whose lives have been touched by brain aneurysms there is plenty to hold one’s attention. Survivors HAVE to begin to believe they’ll be fine or they’ll crumble. And in many cases of those left behind, the desire to DO something is overwhelming after these silent killers attack without warning in some cases. Our fundraising events do more than raise money to help other families, they raise the hope and spirits of those left behind or those surviving.
We were lucky enough to have a lovely article written about Kim after her passing. It was written in the local sports section because she was a fantastic softball player, but beyond that, we have received little to no local media support focused solely on our cause. It’s not for our group’s benefit…it is to raise awareness and to allow others who have been touched by brain aneurysms to gather and support one another.
Our cause doesn’t have a specific color that we brand; doesn’t have a celebrity spokesperson that everyone adores; or a social media “challenge”. The more we’re able to talk about brain aneurysms, the more awareness will be raised and hopefully we can SAVE A LIFE.
It is estimated that up to 1 in 50 people in the U.S. will develop a brain aneurysm during their lifetime. Each year about 30,000 people will suffer a ruptured brain aneurysm. Almost half of the victims will die and of those surviving, only one third will recover without disabilities.
It was chilly for September, even for Maine, and the winds weren’t exactly relaxing but the annual KAT-Walk & Karo-5K held last Saturday was a terrific success! At one point I said the words “My heart is full” to myself after looking out at the many, many people filtering in throughout the brisk morning.
Over 600 people attended the walk and run this year. We’ve never had that many. Granted there was a busload of school kids and we certainly can’t expect, or rely, on those exact people to attend the following years, but it was great to have that kind of show of support.
To me it never really is about the money raised, but the physical show of support seen on the day of the event. You can’t get that warm fuzzy feeling from a check. You can’t share a hug with a credit card charge. And you can’t feel the sense of accomplishment after finishing the run or walk from a $10 dollar bill.
That being said, we DID raise over $30,000 this year! We are also very proud that the “Maine’s KAT-Walk & Karo-5K Chair of Research” was one of eleven research grants totaling $230,000 awarded at The 8th Annual Brain Aneurysm Foundation Research Grant Awards Symposium. The event was held on Thursday, September 11, 2014, in Miami, Florida.
Our 2014 Chair of Research was awarded to Koji Hosaka, PhD, Dept. Neurosurgery, University of Florida. He is working on identifying proteins that can be coated to the miniature coils used in the repair of Brain Aneurysms. It is anticipated that these compounds will be effective to promote healing and shorten recovery times and complications.
Now, back to those warm, fuzzy feelings. Every year, I’m always struck by the people who show up to support someone who has lost someone or to support another survivor. In fact, at our monthly support group, instead of saying “caregiver”, we voluntarily started calling them “supporters”, which I like much better. There are also many people who attend from out of state.
Two such supporters and fellow brain aneurysm survivors, I had met previously and was honored they came to our event. One was from Florida, via Pennsylvania and the other from New Hampshire.
It was nice to actually walk with someone this time! Lori is a walking miracle surviving multiple brain surgeries & a stroke. With the help of her service dog Tober and her husband Ralph, we were a great walking team and they kept me on stride for probably my best time ever. Yes, I was sore and tired afterwards, but I needed to keep up.
Julie has come to our walk in the past and was a huge help at the brain aneurysm awareness tent getting names and greeting other survivors. Julie has had several struggles with other medical issues including breast cancer and she remains an upbeat proponent of being your own advocate for better medical care. We had the same doctor coil our ruptured brain aneurysm in 2006 about 3 or 4 months apart in Portland, ME.
The three amigos had a grand time afterwards giggling like little girls and celebrated the day with a drink. I enjoyed their company tremendously and was thrilled they joined us and me. Again…it’s that show of support that can mean so much to so many.
The endless hours of hard work put in by so many volunteers is all worth it when we see the outpouring of support to raise awareness for brain aneurysms.. My husband, Dave, had a “To-Do” check list that had over 800 items to be completed. I know his niece Kim would be so proud of the work he is doing and would be embarrassed that an event was named after her. I also KNOW she’d flash that fabulous smile seeing the efforts put forth, and know she’s right there beside us the entire way trying to raise awareness about the silent killer that took her from us.
I believe this event would not be as organized, or look as good (flags, tents, signs, etc) without Dave putting in endless hours of contacting survivors, supporters, and sponsors. I hope people who attend realize the personal contact Dave, and other volunteers, have made to make those who attend the event feel welcomed and comforted. I seriously doubt other walks/runs have that kind of personal communication from an organizer. Not only is Dave MY biggest supporter, but he’s trying to support everyone else touched by brain aneurysms. He knows…he’s been effected in multiple ways by them and I love him for his passion and endless drive to make sure the events go off without a hitch (even checking the tides!) and it looks amazing. We actually don’t see much of each other during the event. He and I have to catch up on the day on the long drive home afterwards with the trailer loaded up with the “circus”.
I also realize the event was overwhelming for me this year. I was extremely tired after the walk. I AM just 8 months out from open brain surgery, and there was a LOT of mental and visual stimulation all day. Speaking to many people, walking, taking pictures, unpacking boxes, re-packing boxes, not much food, and being overly tired from work. It’s a shame no one FROM work was there to see the event we have worked so hard to produce and give me some support. But, I’m blessed to be included with the over 20 survivors who attended the event with THEIR supporters. I had my sister Dori and Kim on my mind and walking for them and myself was a privilege. Good for me! 🙂 It was nice to cross the finish line with someone who knew I had actually crossed the finish line and we gave each other a high five and a hug.
Heidi's Brain Blog 