The 3rd annual KAT Walk 4 Brain Aneurysm was held on another picture-perfect, early fall day on Back Cove Boulevard in Portland. Battling heavy off-shore breezes made setting up all of the tents, tables cloths, flags, and banners a challenge, but everyone banded together staking, taping, and securing everything just in time for the walk registration to begin. We will post photos when they’re all available.
With a small committee consisting of family members, some of Kim’s friends, and friends of those who have been touched by aneurysms, to say this walk is a labor of love is an understatement. With no local corporate backing or support, no local professional fundraising support, and no local participation from any medical affiliation, countless hours and money out of our own pockets has been spent to produce an event with great warmth and fondness. As I have said in the past, we may not have the most participants as other larger well-known walks, but what we lack in quantity, we most certainly makeup for with quality and heart.
Each year we have the honor of meeting more and more people who have been touched by this silent killer. For me personally, I have two first cousins who had brain aneurysms, but are survivors. I suffered a ruptured aneurysm in 2006 and had 16 platinum coils inserted into that large aneurysm. Two years later, my husband’s niece, Kimberly, suffered a sudden and massive aneurysm taking her from us at the far-too young age of 32-years old. Four years later that same aneurysm that ruptured for me in 2006 required another procedure and a smaller aneurysm was also discovered that we will monitor on a regular basis.
The KAT-Walk, using Kim’s initials as the name (Kimberly Ann Tudor), was organized to not only honor Kim’s memory, but honor other brain aneurysm victims and their loved ones. This year, our focus has started to lean more towards educating the general public to possible warning signs, symptoms, treatments, and resources.
After my rupture in 2006 the incredible lack of information immediately available to us in the hospital and at my own neurologist’s office was truly shocking. If I hadn’t been able to do online searches for myself while I was still recovering in the neuro-ward, I never would have known other people out there were going through the same thing I was. I was able to educate myself talking to other survivors online. My husband and I came to realize that you can’t expect the medical community to tell you everything unless you ask…and if you don’t know the right questions to ask, how are you supposed to get the helpful information need? Where are we supposed to go? Here in rural Maine, there was nothing.
I did not know that fatigue and depression would be a normal part of my life after my rupture. I did not know that headaches would occur due to dehydration and lack of sleep. I did not know that after my rupture, grocery stores would be an overwhelming experience like no other I had experience before. I did not know that my coils could possibly start to compact and allow blood to flow back into that same aneurysm. I learned all of this either by experiencing it myself, or reading about it online and talking to other survivors on message boards…NOT from the medical community. The two nurses who came to take care of me and check on me after I got home didn’t have tremendous knowledge about brain aneurysms either. They were terrific and a great comfort, but not exactly what I needed at the time.
When I was released from the hospital, they gave me a book on brain injury (not aneurysms) and not much else.
This year we were very moved when another survivor and her family joined the walk committee. By sharing their story with us and their experiences, our wealth of knowledge increased so we could help even more people. They were a tremendous help in setting up the walk venue and she proudly, but gently, made the entire 3 1/2 mile KAT-Walk around the cove and we were all extremely proud of her, especially since she is still having health issues related to her aneurysm.
Raising money and awareness has been our goal. We’ve had marginal success with both the last two years, but a more concerted effort was made to contact the medical community and news outlets for this year’s walk. It’s difficult to gage what kind of effect our efforts made because some people don’t make themselves known to us at the walk. We do not know if all of the hospitals that were sent press packets put out the posters, cards and pamphlets. We do not know if my own neurologist’s office placed posters, cards, and pamphlets out for other aneurysm patients within their offices. We do not know if the OR nurse we made contact with at the Dine 4 Brain Aneurysm event at Friendly’s came with a group of the hospital staff like she said. I’m not sure what else the committee could have done to spread theword and have more people in attendance and bring more attention to the walk and our cause. We do the best we can with the resources available to us. It’s all we can do.
And yet, we keep meeting more and more people each year who have been effected by brain aneurysms so we ARE able to reach and touch people which makes it all worth while. This year was no exception.
I met a young woman who’s father had a rupture and survived but with issues. She came to the walk to simply show her support and expressed her desire to become involved in some way and to thank us for doing something. Another person we reached! Score 1 for us.
Another survivor drove up from MA just for the walk. We met her at the Friendly’s event last month. She survived a ruptured aneurysm and had major brain surgery and is still struggling, but is bound and determine to bring awareness to the general public and the medical community so that others don’t feel alone and lost. She’s a force to be reckoned with and one I’m glad we found! Score 2 for us!
The story that touched us the most and hit home for all of us who knew our Kim, was a group of family and friends that used our walk to share their own story and grief. Another young woman, age 27, was taken far too soon by a ruptured brain aneurysm only two months ago. She was to be married next month. This wound is so very fresh in all of their hearts and we were very moved they wanted to join the walk and participate, especially since it was such a recent event. I hope the walk, and the people they met there, gave them some comfort. I hope they were able to feel a sense of “community” with other family members who have lost loved ones to aneurysms as well. And I also hope we were able to give them a little bit of knowledge to help them understand and cope with their loss. We look forward to getting to know this family more in the future.
No one on the KAT-Walk Committee receives any money for the work we do. It truly IS a labor of love and sharing our knowledge and insight with others is what matters most to us.
Because I was manning the Brain Aneurysm Awareness tent by myself this year, I wasn’t able to participate in the actual walk around the cove. So, this morning, on the 10th anniversary of 9/11, I decided to go for my own memorial walk on the path my husband made for me out in the wooded area next to our house. I thought about the people who lost loved ones on 9/11 and then I remembered our dear Kim and her joyful smile, her infectious laugh and the joy she brought everyone whose life she touched. It was a nice walk. I heard the birds, the trees were moving, the water was flowing by….it was ALIVE. I’m alive despite that damn brain aneurysm and if we were able to help one person during the KAT-Walk yesterday, it’s a good life.
Heidi's Brain Blog 