After months of planning, fundraising, publicity, and hard labor, the morning of September 7, 2013 arrived with anticipations high and temperatures low. As the sun gradually warmed our faces, our hearts were enveloped in the warmth of compassion, community, and accomplishment throughout the day.
As it was for me last year, I was again struck by the number of people from out of state and locally who have been touched by brain aneurysms who chose our event to honor themselves, a loved one, or friend.
The KAT-Walk was originally started by a small group of people wishing to honor and remember the shining star of our lives, Kimberly Tudor who we lost at the age of 32 to a ruptured brain aneurysm. Those of you who knew Kim know the number of adjectives to describe her are limitless. Her loss, at such a young age, was very difficult and finding some way to DO something was very important.
At the time, there were no social events or groups in Maine specifically related to brain aneurysms. A walk along the Back Cove, where Kim enjoyed walking herself, seemed a wonderful way for us to be together and celebrate her life, as well as educating the public about brain aneurysms.
Because I had survived my own ruptured brain aneurysm two years prior to Kim’s death and I was dealing with my issues and demons as a result, the planning, advertising, and discussions for the walk were difficult for me…as well as everyone else. But we felt it was important and it became a real labor of love.
Our original event planned by a small group to honor OUR loved one, has turned into such a bigger event than any of us could have imagined. Those of us who knew Kim, will always know the KAT-Walk is in HER honor, and there is a natural ebb and flow to the amount of participation among Kim’s friends and family that is inevitable at an event like this.
I know the Susan G. Komen breast cancer events started in memory of Susan, but the events themselves have become a gathering place for survivors, friends, and families from all over who have been touched by breast cancer. They never knew Susan, worked with her, or know her family, but the common bond that does unite them is, sadly, breast cancer.
The same holds true for our event. The first year is the most powerful emotionally for those effected by a brain aneurysm, and the love and support from family, friends, and co-workers is what gets you through that delicate time. As lives moves on, so do friends, family and co-workers. It doesn’t mean they don’t care or remember the effected person, it’s just life. And attending events like this don’t hold the importance in THEIR lives as it does in yours. It can be discouraging, but we can only do so much.
We have been so blessed that the group of individuals associated with our walk and run continue to hold fast to our motto to “share our tears, remember with love, walk & run to honor” those effected by brain aneurysms. Our KAT-Walk and Karo 5K committee is comprised of family and friends who have lost loved ones and survivors. Half of them never met Kim, but they do know someone else who was effected, or are survivors themselves and want to contribute in educating the public. The desire to DO something can be a strong motivator.
Karolina Kurka’s family and friends needed a place to grieve and gather in a meaningful way that would also support brain aneurysm awareness. Karo was another beautiful, young, vibrant woman struck down by a ruptured brain aneurysm. Her family chose our walk to do that only a few short months after losing her, and as a result, the Karo-5K was born and many of Karolina’s family and friend are an integral part of the planning and fundraising.
This year, as I sat in the Brain Aneurysm Awareness tent, it was wonderful to see returning local and out-of-state survivors make the trip again. It doesn’t hurt that Maine is a beautiful state and the setting for the walk and run is visually appealing either.
But what struck me most was the number of new survivors I met and how they had heard about the event, made it a goal to do the walk or the run, and worked very hard to accomplish that goal. In some cases, simply making the trip to Portland, was an accomplishment.
The phrase “strength in numbers” came to mind as I met, hugged and shared stories with other survivors. Just as breast cancer survivors join together at Susan G. Komen events and take great pride in surviving something many hadn’t, brain aneurysm survivors know the immediate, and sometime’s deadly dangers a ruptured brain aneurysm can bring. We SHOULD be proud we’re still here and we SHOULD let the public know about.
A survivor who was still recovering from a recent rupture, was comforted in knowing her fatigue, short term memory, and physical awareness could, and probably WILL improve, simply be seeing and meeting other survivors and hearing that it’s okay to be frustrated. Been there, done that…bought the t-shirt!
I also met several survivors who are just damn lucky to be here because of misdiagnosis by the local medical communities. THAT is an issue high on our list of things we’d like to see improved. One woman lived with her rupture for six days before someone FINALLY scanned her. Not only does our medical community need to know the possible symptoms, but if we can educate the general public to those signs, we might save some lives if people get themselves to an ER sooner and insist on getting their head scanned. My own sister may have been saved if she had had a proper scan well before her ruptured aneurysm took her from her soon to be, sixteen-year old son.
The walk is always bittersweet for me. I am a survivor, I’m also living with another aneurysm. I walked for Kim the first year. I walked for my sister last year. This year, I was literally fueled by the positive energy I encountered meeting with other survivors before the walk began.
If you’re diagnosed with an unruptured brain aneurysm, just as it can be now with breast cancer, it does NOT mean a death sentence. There are procedures and treatments that can be performed and you’ll continue to live a long and healthy life afterwards….and making people aware of THAT is also very important.
Well, hell….it’s ALL important, and our messages are starting to get heard which is a very satisfying feeling. If we can save one life, comfort one survivor or family member who has lost someone, then the volunteer efforts put forth by our group of loving individuals who just wanted to honor our beautiful Kimmy, will not be in vain. And I know those angels who were recognized on our honor board and by teams bearing t-shirts with their names and photographs on them, are looking down and smiling.
To all my fellow survivors, KEEP LIVING!
PS: Next year, we’ll work on making sure a photograph of survivors is taken the day of the event.
Just So You Know
I found this blog post to be uplifting, depressing, comforting, and profound all at the same time. I did not write it, but it was written by another brain aneurysm survivor. The blog entry was featured in the Fall issue of the Brain Aneurysm Foundation’s Newsletter, which is where I first discovered it. Robin nicely allowed me to duplicate it on my own blog for anyone else to read. It’s helpful not only to survivors, but it’s helpful to those who live and work around survivors to try and understand a little bit about what survivors go through. In some cases it’s never ending. In other cases, if they’re lucky, it’s a short recovery period. But either way….just having someone, ANYONE, validate the feelings and emotions we’re going through can have a very profound effect on your recovery. THANK YOU, Robin for saying so eloquently what many of us cannot.
This One Is For Us
written by Robin J. Reid on her blog: Faith By Fire
We, the survivors. Brain aneurysms. Those little “bubbles” that form within the arteries/vessels in our brains. Some of ours decided to burst. We then suffered what’s called a subarachnoid hemorrhage. We survived strokes, seizures, emergency (probably more often than not, since these “bubbles” usually go unnoticed until/unless they rupture) brain surgery. If we were fortunate enough, our aneurysms were caught before they could rupture. However, we are all on an uphill battle, whether we ruptured or not. We are strong. We are fighters. We are here to speak and hope that you understand what we’re trying to say. Here are some things we would like you to know.
Just because we look normal doesn’t mean we feel normal.
You can look at us from the outside, and we probably look just like your average Jane/Joe. However, if you could see our brains and had any understanding of what a normal brain looks like, you might see that in comparison, we are no longer normal. We probably sustained some damage from the stroke, and maybe even the surgery. Blood pooling in a tight space like your skull is not good for the brain. Surgery helps, but surgery in itself is also taxing on the brain and the body. Your brain controls your body, and once it’s injured, something in your body becomes injured too. No matter how normal we may seem, believe us when we say we don’t feel normal.
There is no such thing as normal.
We tire much easier than we used to. We have to avoid certain lifestyles. Sometimes we feel everything, other times we feel nothing. Things can change quickly and often. We forget words in the middle of sentences. We forget dates. Sometimes we just really don’t care, and we don’t want to pretend to care. Depending on which area of our brains we suffered the most damage, that’s where we will have the most difficulty as we try to recover some normality. Life suddenly changes to a “before” and “now” mindset. Before is before our brains decided to explode, and now is how we have to live as survivors. We know we’re “not the same,” and we don’t need your reminders. Trust us, it’s frustrating (and probably more so because it’s actually happening to us) for us, too. Please be patient and be kind with us.
Unless it’s happened to you, no, you don’t understand.
No matter how much you want to understand, you simply don’t. Accept that truth, just like we do. It doesn’t make you a bad person or any less of a person because you don’t truly “get it.” We applaud you for making attempts to understand, though, because there are plenty of people in this world who lack that sort of care for others. It isn’t that we don’t appreciate your concern, compassion, or sympathy. We find it endearing that you take the time out to really inquire as to how we’re doing, and offer a helping hand. Thank you for that. But please, do not tell us that you understand when you do not. You cannot empathize with us, because you have not walked in our shoes. However, please know we really do appreciate that you reach out to us in sincerity as we try to regain our footing in this life. Oh, and believe, we hope you never do have to truly understand what this is like. We probably wouldn’t wish it on our worst enemy.
Sometimes, we just don’t want to talk about it.
Yeah, we know “it’s crazy,” we lived it, remember? Sometimes we want to focus on other aspects of life that aren’t so depressing as “most people don’t survive something like that.” Sometimes we want to try to live now like nothing happened before. Of course, we could never actually do that, but we’d like to pretend, okay? If we want to talk about it, we will. But please don’t bombard us with questions or assume that we’ll always want our illness/injury/symptoms/story to be the topic of conversation. It gets old, fast. Trust us. So when/if you see us start to look uncomfortable because you’re broaching this life altering subject once again, to the newest person who has yet to hear our story, try to realize that you’re overstepping a boundary that we may not want to cross. We wake up everyday with a reminder of it all, we don’t want to spend each day focusing on it, but we would like to focus on how we move forward now. We’d like to live for now, but remember where we were then.
Sometimes, we will panic.
There will be times where a twinge of pain, some tingling or numbness, or just an everyday headache will send us into full on panic mode. That does not mean that we’re succumbing to fear, but it does mean that we remember where this all began, and we are hyper-vigilant of it happening again. Some of us even have PTSD from the traumatic experience of the rupture itself and the following days. We know it’s probably not as serious as the rupture was, but it does not stop us from feeling that moment of fear until we realize we’re not in a threatening situation. This usually eases up as time passes and we adapt to our new lives, but just try to understand why we are reacting this way over “just” a headache. It all started with “just” a headache, too.
Sometimes, we don’t know how to respond to “how do you feel?”
This. This has got to be the most well meaning and altogether most annoying question that we hear. Why? Because, we don’t know how we feel! Some days we feel “normal” again, like before any of this ever happened. Most days, there is always some constant reminder of what happened, you know, just in case we ever try to feel normal again. A lot of days we’re just “here.” Not feeling great, not feeling terrible, just feeling present. Some days, we honestly don’t have an answer as to how we feel. We feel blessed that we survived, but we also mourn our former lives. We feel robbed, except no one could ever quite capture the suspect, or reassure us that we would never be robbed again. We feel afraid and fearless. We feel far too old, and like a newborn. We feel strong, and weak. We feel like walking, talking, breathing, living oxymorons. We survived something meant to kill, but we’re still here pressing on. What could be more contradictory than that? We’ll probably just smile and say “I’m okay,” though. Most days we are just “okay.” That’s an okay response, too.
The level of fatigue is (literally) exhausting.
Once again, unless it’s happened to you, you don’t understand it. This is like reverting back to your infant days, except being adults, we are expected to behave accordingly. We need our naps. Even if we think we don’t need our naps, our bodies and brains need that down time. Our best chances at healing are when we aren’t having to use so much brain power to run our bodies. When does that happen? When we sleep. No, we are not being lazy. We are exhausted. Just give us time to rest our brains so we can be refreshed, and continue moving forward. Some of us might even break down into tears (I confess, this happened to me a lot in the earliest days of recovery) if we become too overwhelmed to function and cannot have that nap to recharge. Naps are crucial and welcome. At least until we figure out this how this new normal works. Even then, though, we will probably need more rest than the average person. Remember, we are running on an injured leg, here. Except it’s our brain with the injury.
Sometimes, it still stings.
No matter how far we are from when “it” happened, it still stings to think about. Many of us look in the mirror and truly wonder where we went. We aren’t as happy as we used to be, but at the same time we are much more joyous than ever before, content to just be here, to just live a simple, uncomplicated life. We wonder if we will ever “truly” live again, but we are grateful each day that we get to live because we are always aware of how quickly life almost escaped us. Those pesky barometric pressure headaches some of us have to deal with are reminders. Who needs a meteorologist when you can have brain surgery? Trust us, we can instantly tell when the pressure changes, courtesy of an intense headache. The pills, pill boxes, alarms in phones, notes scattered around the house/car/office are reminders. The incision site’s soreness and tenderness is a reminder. Whatever deficits we survived with remind us everyday of how drastically our lives changed. It still stings. We are grateful to be here, but we can’t just “let it go” that we have lived two lives (and possibly more) in one. That’s why we like to take things one day at a time. We don’t know what tomorrow holds, and we’re done with yesterday. Let us focus on here and now. Don’t inquire too much about the future, but also don’t assume that we are “over” the past because time moves on. Survivors of serious illnesses never really get “over” the illnesses that change their lives, they just learn to live for today as the blessing it is, be grateful they lived another yesterday, while hoping for a new tomorrow.
We need and cherish your support.
Seriously, thank you. Thank you for treating us as normal people, while still tending to our needs. Thank you for reminding us of just how far we’ve come, and just how strong we are on those days we seem to forget. Thank you for trying to make us laugh. Thank you for looking out for us, while not hovering over us. Thank you for driving us around when we lost our driving privileges. Thank you for offering to help in any way you can, even if we may or may not actually ask you. Thank you for your prayers. Thank you for saying you’ll be there, and actually being there. We love that. It’s so calming to know that there are people who will actually come through on the words they say. We don’t appreciate having those people who say they’ll be there, but suddenly disappear once they realize things aren’t the same. That’s okay, because surviving something so catastrophic has taught us the true value of life and life-giving relationships. If you cannot offer us that, we will feel no qualms about cutting you from our lives. No, that doesn’t make us “cold-hearted,” we just know the value of real life, and we don’t have any reason to expend precious energy on relationships that aren’t mutual or true. We need your support. We cherish your support. We value your support. For those of you who truly support us, thank you. We could not soldier on without you behind/beside us. We love you.
Thank you.
Dance For Awareness
The Dance for Brain Aneurysm Awareness event was held last Saturday at the Legion in Westbrook, Maine. Over 200 people attended and it’s believed over $4,000 was raised. It was the first event of this type that the Maine Brain Aneurysm Awareness group has held, and by all accounts, it was a success!
Dave and I arrived early to help set up. One of the nice things about this indoor event was we didn’t have to deal with gusty winds like we do at the walk/run in September. It was a joy to not have to weight everything down and set up tents to protect us from the elements. As a result, setup went fairly quickly.
What took more time was setting up all of the wonderful items that were collected for the Chinese and Silent auctions. Some truly wonderful gift baskets, artwork, and gift cards made for some interesting bidding wars throughout the evening. I won a beautiful painting of a door with two plantings on either side of the entrance. It spoke to me when I first saw it.
Our DJ, Gloria played and sang music from many eras and genres. She pretty much had something for everyone to dance to. Once the lights were turned down, many people took to the floor and boogied. Since I was suffering from pleurisy, I was showing restraint and only did two slow dances with Dave all night. That was about my speed. LOL
The date for the dance was set based on the birthdays of Kim Tudor (Dave’s niece) and Karolina Kurka. Last weekend just happen to fall in between both their birthdays, so it seemed an appropriate time to honor them both, as well as bring to light more awareness and understanding of brain aneurysms, and hopefully help any other families in the area who may have been touched by aneurysms. A few new people did show up and some members of the medical community came, which was truly wonderful!
As Kim’s mother had a difficult time with this event being held so close to Kim’s birthday, I was reminded of how fresh and painful these types of losses can be. The anniversary of my sister’s death is looming ever closer in May and next month I will be having my
aneurysms checked yet again with an angiogram.
But I am very thankful for this band of volunteers and their families who are making the healing less painful and showing us that we can get through this as a community. The unfortunate camaraderie we share is a comfort and the friends I’ve made through this tragedy have truly touched me.
Keep an eye on the MaineBA.org website for more photos of the event once we’re able to gather them all.
KAT-Walk & Karo-5K Events 2012
Even before yesterday’s 4th Annual KAT-Walk and 1st Annual Karo-5K started, I knew it was going to be a special event. The number of strangers effected by brain aneurysms that have contacted us this year about the event was astonishing. I think it also meant that our advertising efforts were finally paying off.
People from Maine, Massachusetts, New Hampshire, Rhode Island, Maryland, and as far away as North Carolina informed us they were coming to the Walk/Run and
let us know WHY they were coming and with whom. Sharing their stories of loss, strength, courage, and survival – our original tribute to Kimberly Tudor’s memory has now become a tribute to anyone touched by brain aneurysms. I’m beginning to think that’s an even bigger tribute to Kim because of her desire to help people and comfort them. I constantly see her smile on these days and I know she would be proud of all of us and the hard work we’re doing.
As a survivor of a ruptured brain aneurysm, and living with another aneurysm, I love meeting other survivors. Our stories are all different and our paths of survival are also very different. Some are more successful than others and all of those examples were represented yesterday.
Dave and I arrived earlier than others at the venue to set up the main display. We wanted something to greet the volunteers as they started showing up to get them excited about the event. The trailer that transports all of the signs, banners, posts, poles, tents, boxes and forms from our house in Augusta, also doubles as a beautiful display of flags. Dave decorates is differently each year. Last year, because the walk landed on the 10th anniversary of 9/11, he decorated the trailer to remember those fallen that day.
This year, because the run was in honor of another family who lost their young daughter last year, the Karo-5k was run and new banners, signs and directional materials had to be created. The trailer included a photo of Karolina and Kim and new signage that Dave and I created.
The committee also decided to solicit for sponsorship this year to help defray the cost of the event and we were highly successful with the venture and could not have done it without them!
Setup for the event, as usual, was extensive and beautifully displayed. There was a brief rain shower that was significant enough to get everything wet, but not enough to dampen anyone’s spirit.
The rain stopped, the sun came back out and the winds picked up. Being on the coast allows for stunning views, the sounds of the water along the shoreline and high winds! We had all of those.
I was joined in the Brain Aneurysm tent by a fellow survivor, Julie. Dave and I had gone over to her aneurysm event in NH last month and she repaid that favor, but also provided a two-pronged attack in our tent to reach out to other survivors or those effected by aneurysms. Julie is a fervent advocate for early detection and fighting for your rights as a patient and demanding your own self care. She is also a breast cancer survivor. Very proud of her.
Two young woman who attended the event yesterday had flown into Maine from Baltimore on Friday night. Sarah had just lost her mom a month ago to a ruptured brain stem aneurysm. At 27 years old, we were impressed she decided to use our event as the way to honor her mother so soon after losing her. It was emotional and comforting for her and I believe everyone who attended welcomed her with open arms and knew how difficult it would be for her.
Both of the mother’s of Karolina and Kim took Sarah under their wings during the day and gravitated towards her, which was understandable, sad, and sweet all at the same time. They lost their young daughters who were both about the same age as Sarah, and Sarah had just lost her mother. Two mothers without daughters and a daughter suddenly without her mother. Touching and heartbreaking.
My own personal heartbreak for this year’s walk was honoring my sister Dori who we lost in May to a ruptured brain aneurysm. She had always wanted to come up for our walk and had met Kim when I had my rupture in October of 2006. How awful, ironic, and heartbreaking is it that Kim and Dori were both lost to ruptured brain aneurysms and I was the one who basically “introduced” them to aneurysms and got them interested and involved. It’s just not right and basically sucks. I find that word one of the best to describe it.
So, I decided to relinquish my duties at the aneurysm tent since Julie was helping me and complete the 3-mile walk in Dori’s honor. The last time I did the walk, was in 2009…in honor of Kim. I recalled a beautiful rainbow appeared that day and we knew it was Kim. Yesterday, I started the walk and about a mile into the walk I realized a little butterfly was flying in front of me off to the side.
I was walking by myself and kept seeing the butterfly, then it reminded me of the butterflies that were placed in the beautiful flower arrangements at Dori’s memorial service and the emotions took over. After trying to walk and cry at the same time, I realized I needed to get off the path, so I stepped aside and let it all out for a bit. Then I resumed the walk. Perhaps this beautiful monarch butterfly was Dori joining me for the walk finally.
As I went around the Back Cove and up onto the bridge, I looked across the water and saw the many flags and tents flying in the wind from our event. It was a beautiful sight and I felt very proud. Then as I rounded the corner and neared the 2.5 mile marker, I was looking at the chop in the water and remembering the one and only time Dave and I took Dori out onto the harbor on his sailboat when she came to Maine for a visit. Dori was scared too death, but we had fun. LOL It was a good memory.
I didn’t have anyone greeting me, but as I dragged my weary bones and feet across the finish line, I blew a kiss to the heavens above and told Dori that was for her. A few minutes later I saw another survivor, Leray, cross the finish line and made sure I ran (well, walked!) to greet her and congratulate her for completing the walk. I was very proud of both of us and Leray will be going in for a recoiling next week, so I wanted her to know how proud of her I was.
This year was also the first time some members of the local medical community participated. My own doctor, who did my stenting and recoiling in 2011, came with his family and Julie promptly made him wear one of the Brain Aneurysm Foundation baseball hats, which he did. He even ran with a baby stroller in tow. We’re hoping to have more medical events in the future so that local EMTs are educated to the symptoms as well as the general public. As I have mentioned before, if I had not gone to the ER and had myself checked out and the Dr. there hadn’t been suspicious of an aneurysm, I may not be here today. Many people have brain aneurysms misdiagnosed, and many are not here today as a result.
We don’t have the exact numbers yet, but it appears there were over 450 people at the walk and run. The run was very well attended and I know that meant a great deal to Karolina’s family and friends. Karo was an avid athlete and had just completed a triathalon a week or so prior to her rupture last July. I’m sure she would have been proud of all of the hard work her family and friends put into supporting this event.
There was a silent auction and this year I finally won those tickets to the Portland Symphony Orchestra’s Christmas concert in December. We had a magician and face painting for the kids and donated food and water to keep participants nourished. This year we rented a sound system with a wireless microphone and were lucky enough to get a fantastic announcer who was a close co-worker of Kim’s. Larry did a wonderful job. I also put together a playlist on my iPad that kept the crowd upbeat and happy.
Unfortunately, I was so busy I do not have any photos of the event myself. But there are some terrific photos of the run and walk HERE-››: Maine Running Photos. Once I receive more photo of the actual venues and tents, I’ll post more links. These are mostly of the run and walk itself and not of the fantastic setup and the new “Honor Board” that was a hit.
Not only is the Back Cove location a stunning venue to hold an event such as this, there is a real sense of community when family and friends meet to support one another and share stories and memories.
Brain Aneurysms don’t discriminate. Young, old, men, women, black, white….doesn’t matter. The sudden and shocking destruction of a rupture CAN be prevented in most cases if the aneurysm is discovered before it ruptures and that’s the word we’re trying to get out. If you’re “lucky” enough to have symptoms before a rupture (some do not), it’s important to get it checked out and insist on getting a good CT-Scan or an MRA. It could save the life of a loved one, or yourself.
Heidi's Brain Blog 