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.
KAT-Walk and Karo-5K Run for Maine Brain Aneurysm Awareness
WHEN: Saturday, September 7, 2013
WHERE: Portland, Maine
Lace up your walking and running shoes and join us for the KAT-Walk & Karo-5K for Maine Brain Aneurysm Awareness. This annual event benefits the Brain Aneurysm Foundation in their efforts to support early detection, education, fund research and create awareness about brain aneurysms.
This year’s event will be held on Saturday, September 7th, 2013, along the Back Cove Boulevard in Portland, Maine. The event starts at 11:30 a.m. on the pathway across from the Hannaford Plaza and the walk & run will take place at 1 p.m. The whole family is invited for a leisurely walk or to enter the timed 5K run. This will be a special day to remember and honor loved ones lost to or having survived a brain aneurysm.
September is Maine Brain Aneurysm Awareness Month. Join us as we “share our tears, remember with love, walk & run to honor”those families affected by this silent killer and help save lives!
For more information:
VISIT: MaineBA.org | LIKE: on Facebook | FOLLOW: on Twitter
Annual Angiogram
Last week was my annual angiogram to check on my large, 20-coiled annie and see how the smaller aneurysm that was discovered in 2011 is coming long.
As usual, it’s an apprehensive time. Even though I have felt fine, one just never knows if the coils have compressed again or the size and shape of either aneurysm has dramatically changed…even though it has only been one year since my last checkup.
Thankfully, at the follow-up appointment two days later, Dr. Ecker said the large aneurysm looks very good. The stent and additional coils that were added two years ago are doing their job…keeping blood from getting back into the aneurysm. He also said there were no NEW aneurysms anywhere else. Great news.
The smaller aneurysm has grown a little bit. It’s not a cause for alarm…yet, but the fact I’ve already ruptured once and it’s at an odd spot on the artery AND has a wide neck indicates to the doc we’ll have to start considering doing something about it. Not immediately, but at some point….while I’m still relatively young – and that’s not much longer! LOL
Even though coiling is the least invasive procedure, I have since learned there CAN be complications and it needs to be monitored more frequently. Clipping is far more invasive, and in my mind more dangerous, but it’s a far more permanent treatment. I need to do more research and ask some people, but I’m starting to lean more in that direction. I could care less about a scare on my head, but it’s the danger involved in the procedure and the recovery period afterwards should there be any complications during the process that concern me.
As usual, the staff in the Maine Medical Center radiology & neuro-endovascular teams were top notch and provided great care. We had a long wait as there was an emergency stroke case that was brought in that needed Dr. Ecker’s care, but everyone was great and I had no residual pain or major discomfort after the procedure. Thank you everyone! Here’s hoping I don’t see any of you for awhile! 
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