Seize The Day?

The Latin saying Carpe diem means seize the day or live each day to the fullest.

Do I Carpe diem? If I’m honest, no I don’t. Being a double brain aneurysm survivor, I SHOULD seize each day, but I don’t. Am I grateful? Of course, I am.  Do I wake up each morning and think “I am so grateful and blessed to be here”? No, I do not. I should…but I don’t. And those people who say they DO wake up each morning and actually think about how blessed they are, the skeptic in me thinks, “Really?”

MY first thoughts every morning are that I’m very tired, or my back or head aches, or that I slept far too long on my left side, which is a bad thing because of where my craniotomy is. No, my first thought usually isn’t how grateful I am.

I wish I could live each day to it’s fullest and feel grateful every day. Although I am one of the fortunate ones who still can, I need to work to pay the bills and secure good health insurance. I think more about those things. And I do more work than Carping that diem.

What I DO think about every day is brain aneurysms. How can I not? I think about my own aneurysms and the issues I still face. I think about the paths people’s lives, not just mine, have been forced to take as a result of brain aneurysms.

The parents who has lost a child. The husband who has lost a wife. The child who has lost a mother.  All of those people I have met and they are a part of my life now due to our shared experiences of losing a loved one to a brain aneurysm.

Brain aneurysm survivors are also a part of my life. We share a bond. We share our fears. We share our frustrations and scars with one another.

I’m not crazy about the month of October, so I’m always happy when I make it through the month. It’s VERY stressful at work in October and my family history has many sad occasions and memories that have happened in October. I suppose I should be grateful the month goes by in a snap…suddenly it’s November. It’s cold. All of the colorful leaves have fallen off the trees. One of these years, I WILL get to the mountains of Maine, stay in a hill-top cabin and view the fall foliage. Something I have yet to do since moving here in 2000.

September is the month when I FEEL the most grateful for being alive and being able to share my brain aneurysm story and help anyone I can. It’s the month chosen for our annual walk and run to honor the lives of two beautiful young women taken far too soon by ruptured brain aneurysms.

Then that pesky cynic within me thinks…I’m pretty sure no one I know would have organized a walk or run in MY honor. That’s how loved and adored these two young women were and how many friends they had. I couldn’t even get one person to visit me at home during both of my recovery periods….which were 6 and 3 months respectively. Yeah…I’m pretty sure I would have still remained just part of the statistics had I not survived. Which makes MY survival even more difficult to take. Why did these two young, vibrant, popular women have to die and I’m still here? I guess it’s to share my story and theirs. Lucky me? I’m grateful? Yeah…sometime’s it’s very difficult to feel that.

BEING grateful every day is a given in my case. If I wake up…yeah, that’s good! FEELING grateful is a whole other animal and it hits me at moments, rather than an every day thought.

I remember feeling grateful at the end of October when my devoted husband and I pulled into the driveway after two weeks in the hospital after my rupture in 2006. Although I wouldn’t return to work for another six months, it was a relief to be home. I was grateful to see the inside of the house I had come to love and to pet my kitty cats again.

I was overcome with emotion that following spring when I walked out to my garden for the first time and it hit me that things were starting to come alive again, as they do every year and that I was grateful, lucky, and blessed to be able to see my garden again. To smell the wet soil. Feel the wind on my face. Yes….I WAS grateful and very emotional as a result. It could have all ended in early October for me.

I feel grateful every September during our annual photograph of brain aneurysm survivors at the KAT-Walk & Karo-5k. I am grateful to be alive and to share this photo with other survivors from all over the state of Maine, New England and the country. I FEEL those moments tremendously.

It’s far too easy to assume someone who survived a life-threatening illness or medical emergency is grateful and lives each day to the fullest. Many don’t have the luxury to do so. Many have such horrible deficits that just living each hour is a struggle. Do they have time or the capacity to even THINK about being grateful? I doubt it.

Without even knowing it, I do believe I am grateful on a daily basis. I can rattle off a list of the things I am grateful for. It’s that seizing the day thing I still have to work on. I’m very tired.

 

The Continuing Adventures of an 11mm Brain Aneurysm

In our last episode of The Adventures of an 11mm Brain Aneurysm, our pesky friend was allowing what appeared to be more blood into the neck of the aneurysm. After 16 platinum coils were inserted in 2006, then four more coils and even a stent were inserted in 2011, blood continues to find its way into the 1/2″ diameter aneurysm that almost cost me my life in 2006.

When we met with Dr. Ecker last year, I made the decision to wait another year and see how things looked. Well, the time to have a look is near.

On March 2nd, I will have an angiogram to see if that area on the neck of the aneurysm has changed or not. It might look the same, or there might be more blood accumulating and action would need to be taken since it is an aneurysm that has already ruptured once.

I’m used to the angiograms. I’ve had so many since 2006. I know many of the radiology folks at Maine Medical Center now. They’re great, but I do wish I didn’t have to see them so frequently.

Balloon Occlusion Test
Balloon Occclusion Test

However, during this year’s angiogram, I will also be given the balloon occlusion test I talked about in last year’s post. They test to see if my arteries can handle reversing the blood flow in that area in case they have to perform a bypass where the parent artery must be sacrificed and the blood flow bypassed for the aneurysm to be effectively treated. I got into a little more detail on last year’s post. Until I know we’ll NEED to do that procedure, I won’t get any more detailed just yet.

The first two steps are to get some pictures of the aneurysm, then see if I can handle the blood flow being cut off to that part of the brain. Sounds scary….and yes, I am scared, but I’d rather have it looked at and know what I have to deal with. It will mean an overnight stay in the hospital which I wasn’t planning on, but if I only have to stay one night, I can handle that.

That pesky, original brain aneurysm continues to taunt me and remind me of the fragility of life and the struggles many, many people have to go through when dealing with brain aneurysms.

Stay tuned for the continuing Adventures of an 11mm Brain Aneurysm!

The Good, The Bad, and The Tired

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?

Balloons, Brains, and Bravery

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.

Hot Air Balloon
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 Awareness tent 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!

DSCN1308
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!