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 andKim and Heidi 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.

Trailer PicDave 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.

Heidi and Dori on boatAs 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.

And Now More Questions

This past April I had my 1-year checkup on my shiny new stent and my additional, sparkling new coils. Oh, and another look at the other 3 mm annie that’s sitting there.

Although I got the all-clear to fly to the UK, the Dr. did notice a slight blip on the original aneurysm, but he wasn’t overly concerned about it this year. We’d monitor it next April. And the smaller Annie hadn’t grown any larger or odd shaped. All good news respectively speaking.

Obviously, the furthest thing from my mind while we were finally in the UK for our delayed honeymoon in May, was losing my sister to a ruptured 6 mm aneurysm. I’m still trying to understand and come to grips with her passing, and in the manner it occurred. It’s too hard and it’s still too unbelievable.

But, her death has also forced me to rethink my decision in 2011 to just monitor the smaller aneurysm. The Dr. did not feel it was at risk for rupture any time soon, but how can he know for sure? How does anyone know if the stress from losing my sister, canceling the rest of our honeymoon, and the annual stress related to the catalog won’t put more pressure on that little guy, or worse yet, additional strain on the larger, already-susceptible 11 mm aneurysm? They don’t.

The Dr. said the 3 mm one would be a good candidate for clipping because of its shape (rectangular), but the mere thought of having my head cut open and the risks and recovery afterwards have me very nervous. BUT it would be my decision and it would be an elective procedure to prevent a major rupture. In my mind, that’s the more important factor.

Now the pisser is that I have to wait until next April to address all of this again at my checkup. Not sure, in light of what my family just went through, I can wait that long.

Support Brain Aneurysm Awareness

That Kind of a Day

I think I kind of suspected a day like I’m having today was coming, which is why I chose to take the day off work because Dave was going to be out all day. Don’t get me wrong, I adore Dave and he has been my rock and my angel, but I think I knew today needed to be a “me” day and no amount of comfort was going to help me get through it. I just had to “do it” as my nephew Ian used to say with great conviction. And I needed to be alone.

Since losing my sister Dori to a ruptured brain aneurysm, I’ve really only cried three times. That probably seems like a very low number to many people. I know my own family members have cried on a daily basis at times. For some reason, since my own rupture, my crying mechanism isn’t the same as it was pre-rupture. I can’t explain it, I just KNOW it is. I also know crying takes a lot out of me since my rupture, so maybe subconsciously I try to avoid crying at all costs….I don’t think that’s it though. My emotional triggers are just “different’ for lack of a better word. I am very sad, very emotional, but crying just doesn’t come as easily as it used to.

I could start to tell I might need a good cry the last week or so. I’ve been quite depressed and lacked motivation to do anything…even make a proper tea, which is very unlike me. Just plop the bag in the mug and I’m done for today. Gasp! Dave left for Portland this morning and I didn’t even hear him leave God bless his heart.

However, the kitties had other ideas and kept coming in to wake me. I knew I needed sleep. I was over-tired and had been having trouble getting to sleep, so I forced myself to stay in bed and get some sleep. I dreamt about Dori though, which always makes me sad when I wake up. Thankfully, when I dream about her, she’s healthy. As I did after my Dad died, I dreamt of him when he was healthy, not as I last saw him in the hospital. I’m glad I don’t dream of Dori in the hospital. It was very difficult to see her in that condition when technically, we had already lost her.

So I woke up already sad and went from there. I listened to music, read outside and tried to just relax and rest. I went out to the road to get the mail and a trigger in the mail started my tears of grief. Several years ago I purchased a Christmas gift for my nephew from the “Adopt A Loon” association in the Adirondacks. I’m not sure if Dori, Jon and Ian ever located their adopted loon, but I knew it was Dori’s favorite bird and thought they’d get a kick out of that. Every year since then I get the newletter from the association in the mail and today was that day. I started to open it, saw the headlines announcing upcoming fundraising events and couldn’t finish opening it. In fact, as the tears started to flow, I ended up just throwing it in the trash.

The next 30 minutes were howls and shrieks of questions that no one can answer. No one. There are no answers for the questions I ask now. No one knows why Dori was chosen. No one knows why the Dr.’s didn’t check her for brain aneurysms. Why didn’t they? What was the excuse given when it was requested? Why didn’t the neurologists look into it before her back surgery? Why? Why? I don’t understand and there is no one who can answer that question for me. Why didn’t I die after my rupture? Why did Kim have to die from hers too? I don’t understand.

I tried to get my sisters to get scanned after my rupture in 2006. It isn’t something I can MAKE them do, but if Dori had…they would have seen the aneurysm and chances are she’d still be here today. I’m having a very, very difficult time with that one. I haven’t been in the position of having to actually make that decision to see if I may have a potentially life-threatening condition, but I’m sure fear is the overriding concern. And I guess I didn’t do a very good job of projecting the advantages of getting scanned prior to having it rupture to my sisters. Now….I have lost one. Do I blame myself? A little bit, yes. Could I have pushed more and become a real pain in the ass to my sisters? Yes, I could have, but I didn’t. And now my older sister has since lost her job and has no insurance. I HATE that health insurance is now the only reason preventing her getting scanned.

She may not even have an aneurysm, which would be great. And even if she does have one, that does not mean it will rupture and ever become an issue, but she can monitor it and she’ll KNOW it’s there and perhaps take better care of herself. Wait…do I take care of MYSELF better now that I know I have another brain aneurysm sitting there? No, not exactly. I still drink wine with dinner, I hardly exercise, I don’t eat that great…..life can really suck sometime’s can’t it? Even the healthiest of individual can be taken by ruptured aneurysms. They didn’t KNOW they had them though, that’s the difference.

Both my sister were/are at high risk because of their age, they’re both smokers and they have a 1st degree relative who has aneurysms. I’m beginning to sound like a broken record….I’m tired of it too. Right now, I lack the energy to fight the system, or God, or whomever it is I feel like I’m fighting to get answers. I don’t know….at times I don’t care. If people choose not to get scanned, that’s there business. All I can do is present them with the pros and cons of knowing you have a brain aneurysm and let them lead their lives. I just hate….HATE that my sister Dori has now become one of those damn statistics. But this particular “statistic” was one I spent my entire life with. This particular statistic left behind a beautiful 15-year old boy and a husband.

I don’t understand it and never will….it’s just grief and I know that, but it sure stinks.

Even More Difficult Post

Those damn aneurysms have claimed yet another beautiful person; one of my older sisters, Dori. The damage done during the rupture was too severe for any kind of a recovery so we had to let her go. Our hearts are breaking.

Such a vibrant, fun-loving individual, my sister was an incredibly hard worker and usually put other people’s needs in front of her own. She will be missed by more people that even she realized I’m sure.

I’m going through so many emotions of not just losing my sister, but of my nephew losing his mother, my brother-in-law losing his wife and my mother losing a daughter.

Then there’s the aneurysm aspect. As with Kim’s death in 2008, I’m faced with my own mortality and reality of my two aneurysms and it’s disturbing and frustrating. Why did I survive my rupture and those two beautiful individuals did not.

I have to use Dori’s death as an example of what can happen in a familial situation if a sibling is not checked. I hate that I have to use her story because it IS so personal and effects me so deeply, but I have to. Dori supported me so much and I need to support her now…even if it’s far too late.

And we need to celebrate her life, not mourn her death. Rest in peace dear sister, I love you.