Seven years ago last weekend, my larger 11 mm brain aneurysm ruptured. Each year I have tried to do something special to remember that day and celebrate my life. Some “celebrations” have been more elaborate than others, like treating myself to a spa day, and others have been low-key affairs mostly due to the time of year because I’m so busy at work in October.
This year proved to be one of those low-key affairs. I had been working long hours on Saturday for a few weeks, but my annie-versary this year fell on a Saturday. So, I took this day off. Then went out for dinner and a movie with my Maine Man. Nothing incredibly special, but it was a night out. I’ll take it.
However, this year, I got grumpy. Almost ticked off. Not AT anyone per say, but I’m a survivor and no one took much notice. (how were they supposed to know anyway?) I guess I need to climb mountains or run major marathons to get acknowledged, as one local woman did and received a huge article in the paper as a result.
The last few years, at our annual KAT-Walk & KARO-5K, I have met survivors who have survived multiple aneurysms and are beating the odds simply be being alive, much less driving and taking care of their children. Some have more help than others and some are dealing with more issues related to the brain aneurysm. Don’t you think they ALL need some attention and love from the state?
I guess that’s where my celebration of life turned to the dark side. A Twitter friend sent me the link to the local newpaper article. It’s a wonderful story of survival…it truly is, but it rubbed me the wrong way especially on the day of my anniversary. It had nothing to do with the fact a survivor had such a strong light shown on her, and it was truly deserved. I think it’s because I see the volunteers (ALL volunteers) put their blood, sweat, tears, and hard-earned money into publicizing our event every September and this article came out in October. September is Brain Aneurysm Awareness Month in Maine. The article would have been terrific the week prior to our walk – which is the only one of its kind here in Maine (MaineBA.org). It was all about the timing of that article that bothered me.
I don’t know what else we can do to try and get the medical community and media community involved. We’ve made them aware of the events. We’ve given them brochures to hand out. We’ve sent them to our website and Facebook page, but actually getting someone to film, write, and participate in our event and has been a huge struggle. I guess we need a celebrity…oh, wait…we’ve even tried contacting with them too! No Patrick Dempsey or Joan Benoit in our camp to help bring in coverage – just a terrific group of volunteers.
If I HAD the money, I’d name a hallway in Maine Medical Center’s 608 Neuro-ward and call it Heidi’s Hallway. I spent many hours walking that hallway….sometime’s running into the walls, somethings only making a few steps with everything that was hooked up to me. I’m one of the lucky ones, but I’m unable to get more focus on the people who have survived ruptured brain aneurysms. If I had more money, I’d sponsor a car in NASCAR for Brain Aneurysm Awareness and get to yell “Drivers, Start Your ENGINES! with a group of survivors”. If I had more money, I’d sponsor a night at a Portland Pirates game for Brain Aneurysm Awareness and have survivors come out on the field and be recognized…together as a united, strong front. If I had more money…I’d have my sister scanned to make sure she too, doesn’t have a brain aneurysm like our sister Dori had. But I don’t, I haven’t, and I’m unable to.
All I can do is continue to bring awareness to brain aneurysms without much money and support from the state or medical community, but through the kindness of family members, friends, and complete strangers who have been affected by brain aneurysms. I HOPE our efforts have helped save some lives. I HOPE other survivors see our stories…read our stories, and come to share THEIR stories with us at the KAT-Walk & KARO-5K each September. It’s all we can do with limited funding and a large group of caring volunteers here in Maine.
So, you’ll just have to forgive my selfish rant that an article wasn’t written about ME on my 7th annie-versary. I should get an award just for survivor the months of August, September and October at work. But I’ll take a quiet dinner with my Maine Man and a movie – that’s probably more than a lot of survivors get.
Stay strong, be proud of your accomplishments, and tell people your story…it could save a life and help other survivors know they’re not alone.