It’s Show Time!

Because this is MY blog and I can write whatever I want, allow me to toot my own horn for a wee bit.

For many, many years, we have tried unsuccessfully to reach out to local print & television news outlets for coverage of our organization’s efforts to raise brain aneurysm awareness in the state. We have provided stories to the right people at the right times, but there has never been coverage of our annual KAT-Walk and Karo-5k.

Last summer we FINALLY received some television love after I responded to a local news reporter’s story on Twitter. She immediately responded to my reply and Dave and I ended up hosting the reporter in our home for a short interview and two very short spots on the local news station that evening.

NewsCenter Maine Video 1 — WATCH NOW

NewsCenter Maine Video 2 — WATCH NOW

A few people saw these videos and commented and we have no idea of knowing how many people actually saw the report and subsequent videos on social media, but if one person saw them, listened to what we said, and went to the hospital to get checked, it was worth it. We haven’t heard if anyone came to our KAT-Walk & Karo-5k as a result of watching the story either, but we still want to get the word out there.

When Mira, one of our committee members who lost her 27-year old daughter Karolina to a ruptured brain aneurysm, was trying to solicit sponsorship funds for our walk & 5K last year, she met a Portland, Maine lawyer. Derry Rundlett offered up his services in the form of impersonations of Elvis and Jerry Lee Lewis at our Dance for Awareness event in March, in exchange for a television appearance on his monthly cable show in Portland.

Derry is 75-years old, full of energy, and was extremely generous with his time and money at the dance. His performances were great fun and fit in perfectly with this year’s Rock n’ Roll theme!

Dave agreed to be on his show some time in April. He asked me to be a part of it as well, so we drove down to Portland, met Derry for lunch, then walked over to the studio to film the 25-30 minute show.

Because Dave and I have spoken to so many groups and organizations about brain aneurysms over the years and how we came to be involved with raising awareness, speaking to Derry came naturally, it was just in front of cameras and in a studio this time. Neither of us were nervous but we certainly wanted to make a good impression, represent our organization well, and raise awareness about brain aneurysms. I think we were successful on all counts.

We had a rough outline of the show, but weren’t aware of exactly what questions Derry would be asking us.

Watch the Derry Rundlett Show about Brain Aneurysms in Maine

WATCH SHOW – approx 25-30 minutes long

Although I have spoken to many people about my own experiences with brain aneurysms as well as about my sister’s death from one, for some reason after this taping I was quite sad and subdued on the drive north back home. Dave and I chatted a little bit, but I really wasn’t in the mood to chat. I have yet to figure out why talking about it on this specific day and in this arena made me sad. I suppose it just “hits me” on some days. I also think because Derry expressed such an interest and appeared to be deeply touched by our stories and our efforts, it rubbed a nerve/emotion that had been resting comfortably for awhile.

And, as usual, I don’t hear much feedback from my friends or co-workers when these shows are brought to their attention, which also depresses me. I need to stop expecting that support. If I stop expecting it, then I won’t be so disappointed when it never comes. You’d think after 12 years I’d learn….oh, well. You can lead a horse to a computer or cell phone, but you can’t make them watch things, right???

Life. Support. Music.

At last month’s brain aneurysm support group, we watched a documentary about a musician from New York City who, against all odds, survived a ruptured AVM. Through the amazing support group around him including family and friends, he was able to not only recover, but prove most of the doctors wrong with their devastating diagnosis’.  Watch a brief follow-up online about the documentary with Jason and his sister HERE.

Tonight, we were able to meet Jason Crigler in person, hear his story first hand, and ask him questions. There truly aren’t enough descriptive adjectives to convey what one feels after hearing and seeing Jason’s story.

In 2005, soon after he returned home from a year-long stay in the hospital, Jason's family (his daughter, wife and father) take him for a walk in the woods.

He is a soft-spoken, warm, and funny man. If you didn’t know his story, one would never know the extent of the struggles he and his young family have had to endure.

Jason’s story was documented by a friend who video taped much of his early recovery and made it into a critically-acclaimed documentary called LIFE. SUPPORT. MUSIC. It’s painful to watch, especially as a survivor of a brain injury myself. He could be me…I could be him. The uphill battles are all very similar, but Jason was very motivate to recover with a new-born baby girl, a budding music career in New York City and a family that sacrificed their own lives and comfort to care for him on an hourly basis.

Tonight was very special and it’s a damn shame more people (even from our own groups) could not attend this widely publicized event. The old adage, you can lead a horse to water but you can’t make him drink, held true tonight I guess. You get what you give…and some people give more than they have to give, but receive very little in return. It’s a damn shame.

Jason’s story is a story that needs to be heard and obsorbed. I only wish I could speak as eloquently and effectively as Jason does, or I’d take my little stent, coil & clip show on the road too. But who the hell would show up to listen to me? Probably only just a few. I know my story isn’t nearly as compelling. We can’t even get an article written about our group.

There was one article written a couple of years ago. About a woman who only came to our meetings maybe two times. She was certainly very attractive & photogenic and lived in an influential area, so that right there was two up on me. Even the one small TV spot we DID have ended up being shared by a completely un-related disease, so we couldn’t even get a full 2-minute spot for ourselves. Really? What DO we have to do????

But…even if we did…would it make any difference? We met a few new people tonight and we welcomed them with open arms as we always do. I hope we see them again and that they spread the word about our group and our efforts to raise brain aneurysm awareness in the state. Exposure could save lives….WE could save lives.

I think you’d be hard pressed to find a group like ours (or at least that one special person) that gives such personal attention to those who have reached out to us. I don’t think the president of many organizations would send personalized emails complete with moving letters and related photos to someone who writes and donates and expressed great regret they’ll be unable to attend this year’s event after having attended all of the other previous ones. I think it’s the personal touch that sets us apart from other groups. The behind-the-scenes workings are amazing and the hard work that goes into every event, every email, every newsletter, and meeting follow up, is more than most are doing. Does it matter?

People need to DO more. They are not and it could mean lives of people are being lost as a result. Picking up food for an event will feed the volunteers and participants. For one day out of YOUR life, you could help an event run smoothly and make it a success, meaning those who attended and those who heard about it and read our materials will remember what the event was about and LEARN….and potentially save a life of the next person who has the “worst headache of my life”.

(stepping down off my soap-box now)……back to Jason Crigler.

Jason’s positive & simple attitude about his AVM and recovery is truly inspirational. Many things he spoke about tonight touched me deeply and certainly would have touched a lot more people if they had taken the long hour and a half out of their busy lives.

One thing he said was that there is “strength & power in thought”. We can choose to think we’re failing or think we’re succeeding and it can truly effect the rest of your body. He admits to bad days and depression and despair just like the rest of us, but it’s reminding yourself of the struggles you HAVE overcome and how far you have come that one needs to be reminded of. We all have struggles on a day-to-day basis, but it’s how you deal with, and think about them, that can lead you to a path of strength and power.

I needed to hear those words tonight. My 10-year Annie-versary of my ruptured brain aneurysm is coming up on Oct. 4th. I’m lucky to be here. I know that. I also know others haven’t been so lucky and if sharing my story can save one life, I’m going to do it. If complaining about a lack of support can garner a little bit more, then I’m going to do it.

My sister died from a ruptured brain aneurysm. I had to see her lying in a hospital bed completely unresponsive on a ventilator, with her head shaved, with wires in her open skull and a drain relieving blood from her brain. She was basically gone at that point but we held out hope for a miracle. It never came. I may have failed saving my own sister in educating her enough on the signs and symptoms, but I MAY be able to save one other person. I MAY be able to help one person recognize the symptoms and get them to a hospital in time.

I have to hold on to that…otherwise, why was I saved and Dori wasn’t and why was I saved and Dave’s beautiful 32-year old niece Kim wasn’t? Two beautiful, sweet, funny souls who did nothing but good for others. I’m not nearly as beautiful or sweet, so I have funny going for me…and a chance to DO something in this world and get the word out and share my story.

I may not have friends who care enough about me to film a  documentary, come to our events and support me, tour the country and make money from it, but I DO know I am blessed to be here still.

THANK YOU Jason, for sharing your story, answering our questions, and driving all the way up to Portland to meet with us. And thank you for making people aware of the struggles people with brain injuries can endure…and more importantly, can overcome. You’re a true inspiration!

 

Two-Year Clip-Aversary

Me! Brain Aneurysm Survivor
On the anniversary of my ruptured brain aneurysm in 2006 and subsequent coiling, I call it my “Annie-versary” stealing the phrase from other survivors from the Brain Talk Community online who helped me through my recovery. For some reason I feel I need to give my 2nd brain aneurysm procedure (the clipping) a different annual name. Like I’ll be criticized for calling that an Annie-versary too? LOL I doubt it, but I do.

Saturday is the two-year anniversary of the clipping on my second, unruptured brain aneurysm. It turned out to be a delicate aneurysm and it was a delicate time. I had lost my other sister just a few weeks prior to my scheduled surgery and I was wrestling with whether I should go through with the surgery or not. It wasn’t until my niece and mother (who we lost last year) spoke to me and encouraged me to proceed, that I made the final decision to keep the date and proceed. I truly didn’t want to put them through anymore.

I think some angels were watching over me because it was a good thing I DID get the craniotomy & clipping. It was an ugly, thin-walled brain aneurysm that would have surely caused me issues, if not caused my death, at some point down the road.

For my two-year update I’ll recall an earlier format I used to update my family and a few friends on my blog about my recovery process.

FATIGUE: There are still days I KNOW my brain had too much stimulation. It’s difficult to describe other than my brain is tired. I suppose that is something that will never go away. It does get better, but I’ll be able to realize when I need to rest my brain. Not just sleep, but do nothing…think about nothing…just nothing. I need those days still. I also notice my left eye lid will get a bit droopy when I’m overly tired and haven’t eaten much.

PAIN: 
These days, the only pain I feel that is associated directly to the clipping is on the left side of my skull. I have no idea what triggers the pain and I often have difficulty laying on the left side of my head. It “feels” like my brain shifts to the left against my skull and there is pressure there. It’s not a daily pain, but I certainly notice it when it is bothering me and I have to roll over and lay on the right side. Sneezing doesn’t bother me, but coughing really does. I feel it throughout my head and it makes me tired.

NUMBNESS:
 As many people said, including the Dr., this may or may not go away. The skin on my skull hasn’t completely “reconnected” all of the nerves, so a great chunk of it is still numb. I only notice it when others touch my head now. My hair dresser or Dave. At least it’s not painful….just odd. I certainly could have worse issues, so I consider myself lucky.

STITCHES/INCISION:
 I can feel the incision under my hair line and the hair has all grown back so that part isn’t even visible anymore. As the swelling went down and I lost a little bit of weight (20 lbs at one point), the bone flap area “settled” into the skull quite a bit and a dent has appeared. The pins and small plates that secured the bone flap back onto the skull area are also visible and sticking out under the skin on the skull and I most certainly feel them. I’m not crazy about the dent or the brain “bling”, but it is what it is and I doubt anyone but me would really notice them. Although when I have my hair parted differently and the light hits it just right, Dave will notice and always points it out. I’ve seen much worse dents on other survivors I have met, so in comparison, I’m lucky.

Found this great PDF: https://profiles.utsouthwestern.edu/profile/67812/assets/patient-information.pdf

And this one: http://www.mayfieldclinic.com/PE-Craniotomy.htm

BRAIN FUNCTION:
Well, I have survived two more catalog seasons, so I guess my brain function is doing okay. I certainly feel tired at times, but I’m very, VERY lucky that I can drive, work, read, and function on a daily basis. I’m a little slower and a little more careful when walking and traversing walkways, hills or paths because I have a bit of a fear of slipping or falling and hitting my head.


I do still struggle with some survivor’s guilt. Why, dear Lord, am I so lucky with my multiple brain aneurysms when two (and possibly three) people I loved so much were victims of the same ailment? One can say because God has other plans for me to help others. If that’s the burden I have to carry, then so be it. I can’t say I’m crazy about it though. I’d rather have Kim, Dori, my mom and Rhonda back.

So, I will celebrate my clip-aversary in some fashion I’m sure. I’m glad I’m still here and I hope a few others are as well.

11-Month Update

I realized I haven’t given much of an update on how my brain aneurysm is doing for many months. My 2nd aneurysm was clipped 11 months ago.

Physically, the hair has all grown back and didn’t ALL come back in gray, but certainly one streak snuck it’s way through. A few blonde highlights helped cover that up temporarily.

The incision where the skin was pulled back, then replaced and sown on with 53 stitches is almost non-existent. I say “almost” because there are still some dry, itchy spots directly along the incision cut that’ll flare up occasionally.

I do still have quite a good chunk of my scalp that doesn’t have much feeling and some nights it’s uncomfortable to lay on the left side of my face and head still. I haven’t been able to determine what triggers that uncomfortable feeling yet. But I certainly feel it and know that the brain bling, the bone plate and screws are there and making their presence known.

A good indentation has now become more pronounced where the piece of skull was removed the replaced, however. I can cover it up with my bangs for the most part, but I know it’s there and I’m a tad self-conscious about it. I don’t know why I feel that way….I should be proud of my battle scars and brain bling.

I believe I’m supposed to have a follow-up angiogram in January and I’m looking forward to finally seeing the images of the clip and it’s location. And hopefully everything will look good with the clip as well as the other, older, clip-filled aneurysm and they don’t locate any others.

I’m so ready to kick the year 2014 in the arse and kiss it goodbye.

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Still looks better than it did 11 months ago below

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Post-surgery. Yikes!

The day after craniotomy & brain aneurysm clipping