Tag: Maine

A H.E.R.O Among Us

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On this past Labor Day holiday weekend, Dave and I attended the Nolan’s H.E.R.O. Foundation 1st Annual 5K Run & 3.13K Walk in Pittsfield, Maine. About a 40 mile drive north from where we live. We brought a Brain Aneurysm Awareness tent and information regarding brain aneurysms.

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Nolan’s H.E.R.O. Foundation is a non-profit organization formed to carry on the mission of Nolan Berthelette. who lost his life to a ruptured brain aneurysm just a little over a year ago in 2014. At the very young age of 14, Nolan’s death struck a chord in this tight-knit community and the outpouring of support his family has received is overwhelming and inspiring.

Last year, just a short time after we heard of Nolan’s death, our group contacted the family to see if there was anything they needed or if we could lend support and comfort. We were surprised when a group of over 160 people arrived at our KAT-Walk & Karo-5K just a few short months after losing their son, brother, friend and team mate to this silent killer. Emotions were still very raw and many had a difficult time, but we had hoped the support and comfort they felt from the local brain aneurysm community would help in some small way on their paths to healing.

When Nolan’s parents set up their H.E.R.O. Foundation and pursued holding an event in Pittsfield, we knew we had to have a presence in some form and show OUR support in return for their event. Sadly, it was just Dave and I from the group in the southern part of the state, but it was an honor to be there and help in any way we could. We provided almost off their tents and their fantastic crew of volunteers made setup and tear down an easy experience.

Ray, Amy and Nason are still grieving the loss of Nolan, but setting up the foundation and creating, what they hope to be an annual event, allows then to be able to DO something, where they weren’t able to save Nolan. I know that’s something that everyone struggles with after losing someone: if they only could have DONE something to save them or help. That helplessness and lack of control can linger for years.

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As we arrived in Pittsfield at the Maine Central Institute’s football field, the town was still waking up on a brilliant morning filled with blue skies, light fog, and the hangover of Nolan’s former football team kicking butt & taking names the previous night on that very field with a 64-0 win! How appropriate.

The number of volunteers and donated items was remarkable. Truly a community effort. So many parents knew Nolan because of his friendship with their children and they know and love Ray & Amy and wanted to show their support in any way they could. Cheerleaders from the school were there to cheer on participants, the entire football team, tired from the previous night, showed an amazing amount of energy and support and helped in any way they could.

Since we were in a tent representing what killed Nolan, we weren’t sure how many people would stop to talk with us, but it was a nice mix of curious adults and teens and those who knew someone else who had a brain aneurysm as well and I think they all appreciated us being there, even if it was a painful reminder.

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The most poignant moment for me was when a group of young ladies from Nolan’s school came to the table. I think they were mostly there for the free brain aneurysm awareness bracelets, but they did ask a few questions and seemed genuinely, albeit hesitantly, interested in exactly what had happened to Nolan. Dave tried to be very sympathetic and careful in explaining what an aneurysm was and how it effects the brain when it ruptures. At one point I saw one of the girls place her arm around another lovely young ladies’ waist for comfort. It’s those simple gestures of compassion that can mean the most to someone who has lost a loved one to brain aneurysms. I know…I’ve been there.

I think the family, Nolan’s classmates, and the community are moving in a good direction by honoring Nolan in such a positive way. I never knew Nolan, but the stories I hear about him indicate he was a very special young man and had an amazing life ahead of him. The number of orange items, Nolan’s favorite color, was evident throughout the event in his honor.

H.E.R.O. stands for Helping Everyone Realize Opportunities. “Being a hero doesn’t take someone that is superior to others or with an abnormal power. All it takes is an average human willing to do what is right for others.” Those are words written by Nolan in his last essay and they have inspired Ray and Amy to create the foundation.

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If you know someone who is “willing to do what is right for others”, let the world know and nominate them for a “I Am A H.E.R.O” bracelet on the Nolan’s H.E.R.O. Foundation website.

I think everyone knows an unsung hero in their life. Why not recognize them in a special way and let the world know they are a true H.E.R.O.

Heidi's Brain Blog

Reminders

Published on by heiditea1 Comment

Our monthly brain aneurysm support group meetings are a wonderful way for survivors, their supporters and for those who have lost loved ones to come together and discuss this horrible thing that connects them. The fantastic medical professionals who have come to speak with us have opened the eyes of those who haven’t been educated themselves and have helped supporters gain a better understanding of what their loved one has gone through. I rarely come away from the meetings feeling anything other than positive energy and proud of the group, but tonight was different.

Dori and I in Maine Three years ago tomorrow, we had to say goodbye to my sister Dori. Her rupture was massive and deadly. She ruptured on Mother’s Day and was kept on life support until the 29th of May. No signs of life and no signs of recovery were recorded. They had shaved her long, thick, mostly gray hair from her head completely. She was on life support, a ventilator, and had a drain set up to alleviate and remove fluid on her brain. It’s an image that still haunts me as the last time I saw her.

Some of our discussions this evening at the support group centered on drains and locations of brain aneurysms. Dori’s aneurysm ruptured on her brain stem, which was catostrophic. As these discussions took place tonight with a survivor who had a drain and a rupture, the image of Dori in that hospital bed was running on a loop in my head. I’m glad we flew back from London immediately to see her at the time, but it technically wasn’t her in that bed. She really was gone the day of the rupture but I see her in that bed this week and my heart hurts because I miss her so very much.

I know for those who have lost a loved one, the support group can be sad, educational and scary all at the same time. Usually I’m naturally focused on the survivor side of it because I am one, but unfortunately, I also have the flip side as part of my life in losing my sister and Dave’s niece to massive ruptures. The successes (me surviving I guess) don’t quite balance out the failures (losing Dori and Kim) but life still goes on around us and I’m still alive to try and help others if I can. If we’re able to get one person scanned or help one survivor understand their situation better and offer comfort, then those lives lost will always be with us as a reminder at how precious life is and how we all can DO something.

Chatty Cathy

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We had another brain aneurysm support group meeting in Portland. The turnout was not as good as in previous months and we’re sure it’s because of the beautiful weather we were having. There were only two of us for quite some time, then we learned the speaker had to cancel due to a death in the family. Now what?

Finally a few more people showed up and a decision to simply have an open forum of discussion was agreed upon. There were 21 at last month’s meeting and this month was about half that at 11. There were four survivors and 3 care givers, two mental health care givers, Dave’s sister Nancy, our own medical person from the hospital and a reporter. I knew there was a possibility the reporter would be there to write a story, so we were very pleased when a few more people showed up.

As it turns out, it was probably one of the best group sessions the reporter could have attended because there WASN’T a speaker. We spoke freely, asked questions of one another and shared frustrations, fears, and our collective “brain bling” because the four survivors in the group were craniotomy & clipping recipients. It was a wonderful hour and 15 minutes of sharing and in some cases educational for a few.

I seemed to think I was overly talkative when I thought about it afterwards. I think because the reporter WAS there, I wanted to make sure some of the efforts of our group and our events were brought to attention as well as some of my own personal experience. And perhaps I did a bit too much. Probably the reason the reporter never spoke to me personally about my experience…I blabbed about it the whole meeting. LOL I was the only one she didn’t seem to speak with afterwards. I guess I gave her enough info…and then some, or my story just wasn’t that intriguing.

It was nice to speak up and out. I don’t get the opportunity very much, other than in this blog, and I never know who is, and isn’t reading my blog because they rarely make themselves known to me. I enjoyed knowing I could speak freely and have people understand some of what I was talking about. I hope I didn’t do too much or interrupt. Listening is the most important thing you can do at a support group meeting. It’s why we’re there…to lend support and allow people to speak. I just spoke…and spoke…and spoke. So I apologize if I ran over anyone. Chatty Cathy can be powerful!

The Old Two-Day Meeting Test

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Well, nothing like an hour and a half drive and two full days of meetings to test one’s fatigue and stamina!

I had to attend a two day conference where just getting there was a first test. Driving an hour and a half away was the longest I have driven along since my surgery. It’s an easy drive, but one must concentrate on staying focused while driving. I did…I arrived…I was tired. I would have preferred to close my eyes for 15 minutes, but the agenda would wait for no one.

Paying attention, listening, interacting, taken notes, and just plain old thinking took their toll on me both days. We have very few meaningful breaks where I could rest properly and one day we worked through lunch while we ate, so I had not chance to leave and rest. I made the drive home and promptly just wanted to settle into a hot tub and soak my tension away – which I did!

I don’t expect anyone to understand what I’m going through and I certainly hope no one thought I was bored or falling asleep those few times I actually had to close my eyes during the meetings, but I had to take care of ME. I’m only a little over four months about. I may look fine, but I still have my days and times when it’s a struggle.

Well, at least I look better than I did four months ago! 🙂