Bench Warmers

13 years ago this week, my first brain aneurysm roared into my life with an early morning rupture during the busiest and most stressful time of year for me.

I had heard the term before because my cousin in Philadelphia had her un-ruptured brain aneurysm coiled a few years earlier. But I truly didn’t know what it was, nor how serious it could be when the ER doctor told me I had a brain aneurysm. I just remembered thinking it wasn’t a good thing.

After my coiling the next day and the subsequent 21 day stay in the hospital, I had LOTS of time to think about aneurysms and try to learn more. Even after I left the hospital I was very confused about how they were able to get the coils up into my brain from the right side of my groin when the aneurysm was on the left side of my brain. No one drew me a diagram or showed me a graphic…I just didn’t know. And no one in the medical community shared any of that kind of info with me or my boyfriend (now husband).

In rural Maine at that time, there were no resources available for brain aneurysm survivors. Although I wasn’t able to read very well yet, or type very well, I had my laptop with me in the hospital. “Friends” DVD’s really saved me during that time, but I also discovered an online brain aneurysm support group. It wasn’t associated with any foundation or national organization, but there were survivors from all over the world chatting about brain aneurysms. I FINALLY had some questions answered from people who were going through the same things. It was a revelation.

It was there that I met Julie from New Hampshire. She was still recovering from her own rupture three months earlier. She was taken to Maine Medical Center and had the same procedure and doctor as I did. It was so nice to speak to someone who knew the struggles of the 608 neuro ward as well as the fatigue, emotions, and recovery process associated with a ruptured brain aneurysm.

There were men and women of all ages from around the world in this group. Some had more serious issues, which was unsettling when I’m still actually IN the hospital, but it also allowed me to see I was not alone and that there were survivors out there who were many, many years out and thriving. They gave me hope and comfort.

I kept in touch with Julie after I was discharged and we continued to speak online and share our struggles and recovery. When Dave’s niece Kim passed away from a ruptured brain aneurysm and her friends and family created the KAT-Walk in Portland, Julie drove over to attend one of the first events. Her support meant a great deal to me and it was great to meet her in person! Social media apps and cell phone capabilities weren’t as active then as they are now.

We also befriended Lori, another survivor from Florida who was having a very difficult time with a massive brain aneurysm. The three of us met in person for the first time in 2011 in Massachusetts at a brain aneurysm awareness event along the coast. The three of us walked the course, shared survivor stories, laughed a lot, and hoped we’d have another opportunity to see each other again.

Lori, Julie & myself in 2011

Both Julie and Lori have had other medical issues since I met them. Julie has another brain aneurysm that is being monitored and has survived breast cancer. Lori is a walking miracle having endured multiple, highly dangerous brain surgeries and has a brain filled with hardware. Both of these terrific ladies are an inspiration.

Lori was a good resource for me when I had my craniotomy on my 2nd brain aneurysm in 2014. She called to check on me and gave me the best advice about ice being your friend! SO true! Even today, when I’m overtired and feel my face swelling where I had my surgery, I place ice there and always think of Lori. She certainly has had her share of ice.

That same year, Julie and Lori made the journey to Maine for our 6th annual KAT-Walk & Karo-5k for brain aneurysm awareness. I was thrilled they were both coming. Julie helped in the brain aneurysm awareness tent and Lori did the run with her new service dog Tober! It was great to meet her husband Ralph. What a fun couple.

It was a cool day on the Maine coast and sun-lover Lori was very cold! They were all so nice to stay afterwards to help tear down the circus, but since we’re all brain aneurysm survivors….we tire quite easily and silliness ensued! Having a seat on one of the benches along the Back Cove was a nice respite where we could rest, chat, and cuddle to get warm. I don’t know what precipitated the see no evil, hear no evil, speak no evil photo, but it worked at the moment.

Julie, Lori, Ralph, and Tober joined us for our after-party and the silliness and good times continued. When you meet people you just click with, even if you don’t see them or speak to them that often, it just works. Good, good people.

The after party – 2014

Since 2014, our lives have changed a lot. Some worse, some better, but we’re still thriving and surviving. Julie has come to the walk several more times to support us, even when her husband was struggling with a serious health issue. Lori had plans to join us one year, but a pesky hurricane kept her close to home in Florida. We are no longer members of the online support group, but keep in touch via Facebook.

Thankfully we were all able to get together again this year for the 11th annual KAT-Walk & Karo-5k. As it was five years ago, the weather was chilly and a few showers moved through. Lori dressed appropriately, Ralph wore shorts, silly man! Tober is his usual amazing doggy self. What a good, good service dog.

Ralph did the walk with Tober, Julie helped me out in the brain aneurysm tent and Lori ran/walked the 5-k. She’s amazing.

We decided to recreate our “bench photo” from five years ago to mark the occasion. I’m five years older and about 10 pounds heavier, but we still had a lot of fun.

Then they joined us for the after-party which was filled with laughter and medical stories. Survivors LOVE to share & compare their stories and to give great details – myself included. The great thing about these ladies though, is that there is great empathy for one another. Yes, brain aneurysms brought us together, but we’re now connected in other ways and we respect and care about each other’s families. Now THAT is a support group.

So, as I “celebrate” surviving my ruptured brain aneurysm 13 years ago, I also celebrate finding these two terrific ladies and THANK them for helping me get through my recovery, healing, and living.

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???

Always There

At tonight’s brain aneurym support group meeting, I was reminded of the potential peril I may still be in.

My neurosurgeon/interventional radiologist gave a presentation about new treatments of cervix carotid artery brain aneurysms — aneurysms on the carotid artery in the neck. This was very relevant to one survivor in our group who has a 2nd aneurysm that is being watched right now in that sam area.

This report was originally given to neuro-medical doctors and was quite detailed with highly-medical terminology.  As explicit as it was, one was able to get the gist of it: they’re doing some pretty amazing things these days and saving lives.

The report was also funded by a research grant sponsored by our Maine Brain Aneurysm Awareness Committe, and Dr. Ecker explained how the money we gave was being used to purchase the detailed imagery needed for this paper. We are thrilled to be able to do it.

This presentation was about 30 minutes interspersed with questions from our group and Dr. Ecker giving us great explanations. Then a second, 10-15 minute presentation was given regarding his use of the pipeline procedure which is saving many, many lives and used more and more. I only wish it could be used with my case.

It was humbling of Dr. Ecker to admit that there are some aneurysms that are just trouble makers and that they can only do so much in some cases. Meaning, they’re still only human and one of their biggest challenges is the interaction between metallic fixtures and human biology with in the brain.

Some people just have such funky arteries due to vascular disease that the doctors can try and try to do everything they feel is right but due to the physical makeup of their arteries, it’s a challenge. I’m pretty sure I’m one of those challenges with my larger1st aneurysm.

Dr. Kwan, my doctor at the time in 2006, did the best he could at that time to fix my 1/2″ diameter brain aneurysm and save my life.  It worked…for five years until the 16 platinum coils inserted into the aneurysm started to compact and blood started to get back into the aneurysm.

Enter Dr. Ecker and the stent and four additional coils he added to my metal repertoire. This procedure went very well and everything looked great. Until more blood started getting into the neck of the aneurysm again and we are now watching it.

Because I already have a stent in that artery directing blood flow past the neck of the aneurysm, it’s highly unlikely and not recommended that using the pipeline will, or CAN be used to keep blood from getting back into the aneurysm.  And the research and reported procedures on putting a stent inside of another stent with similar conditions is non-existent. Hence…more waiting.

In the meantime, I live my life one day at the time hoping more blood isn’t getting into the neck and forming a bulge there that may, or may not rupture. I don’t have high blood pressure, I have never smoked, but I do have a highly stressful job for about 3-4 months of the year and I am not eating that great or exercising. From what I see, even if you ARE in great shape…if your arteries are “funky”, they’ll do what the want to – aneurysms really don’t discriminate.

Dr. Ecker and I have previously discussed options and they’re quite limited at the moment, but seeing the groundbreaking procedures that are being done in our very own state is giving me hope that a solution is in sight. I’d prefer NOT to be one of those challenges, but my arteries have other ideas.

I don’t think about it everyday, but certainly after a session like this, it’s the topmost thing on my mind and knowing there are doctors and a great staff here in the state of Maine is a comfort. I KNOW they’ll do their best and I KNOW they’ll give me the best advice and recommendations at their disposal. We are blessed to have such talented doctors in our state who are taking such good care of us. THANK YOU!

 

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!