Perspectives

Our group held its second brain aneurysm support meeting tonight since the start of the pandemic. Held outside, with proper spacing, and all wearing masks, we enjoyed a stunning, summer evening in Portland.

July brain aneurysm support group meeting

There are regulars who attend the meetings every month and there are those who try to attend when they can. So, we never know who is going to attend each month. Sixteen people attended tonight with two new survivors and a neuro nurse who brought a unique perspective to the group.

At last month’s meeting, our first since February, our group facilitator asked us to find something positive that has happened during the pandemic instead of trying to focus on all the negatives…because there certainly are a lot. It was a wonderful idea and gave us a chance to catch up with one another. I don’t believe the words “brain aneurysm” were even mentioned that evening. We left feeling “good” and grateful for those positives we were able to mention no matter how small they might have been.

Tonight we were asked to share something we have done this summer that has allowed us to get away from the chaos and uncertainty. We also went around the “room” and shared our brain aneurysm stories again. With new people in the group it can put them at ease to hear other’s stories, know they’re not alone, and it allows us a chance to offer advice and comfort if needed.

After 14 of us shared our relationship to brain aneurysms and added our “summer story”, we then met Elizabeth who has been a neuro nurse for over 30 years and who currently works at Maine Medical Center. It was fitting she was the last in the group to share HER story after listening to all of OUR stories.

She was not a brain aneurysm survivor and didn’t have a relative who had a brain aneurysm, but because of the field she is in, Elizabeth has seen the effects that a brain aneurysm can have on patients and their families at their most vulnerable stages: admittance to the hospital and during emergency and elective medical procedures.

What she does NOT see is how those patients fair once they leave her care and guidance in the neuro ward. So, tonight it was an eye-opening and rewarding experience for her to hear from survivors themselves, how they’re coping, how they’re surviving and thriving after their first, second, and sometime’s third experiences with brain aneurysms.

Elizabeth eloquently shared her feelings regarding our group and the survivors who shared their stories and how it gave her a new perspective and insight into healing and recovery. A perspective she never would have got had she not joined us tonight.

It also dawned on all of the survivors that, of course, a nurse who cares for these patients for a brief period during the ugliest parts of the patients experience would wonder how is that patient doing now? How is their family coping with this trauma? Did they regain their memory? Were they able to walk again? One forgets they must see patient after patient and not really get any kind of resolution or closure because THEY aren’t the ones who meet us during our followup appointments at the neurosurgeon’s office.

Elizabeth also shared that they don’t really remember the type of brain aneurysm we had, or its location, but they DO remember the family and the people around the patients and perhaps their initial struggles. She remembers the patient…not the medical condition.

What an eye opening perspective for us all to hear. We thanked HER for sharing that perspective and she thanked US for allowing her to hear our stories about our lives and healing after our initial brain aneurysm experiences. She also realized that the healing and PROGRESS can occur well after one or two years.

Many survivors are told they’ll be healed and back to “normal” in a year or two or that after two years, you got what you got. Many survivors also know this is NOT the case. You may look normal, but your brain can still be struggling with many, many different smaller deficits that, in time, WILL and can get better. But it takes time…lots of time.

I am so glad Elizabeth and the new survivors joined us tonight and shared their stories. It’s a good reminder of how fragile life is and those stories continue to inject new perspectives on SURVIVING and THRIVING with brain aneurysms.

Love & Peace

Pitch to the Head

Six years after my craniotomy to clip my 2nd brain aneurysm, I discovered it can still cause me pain.

Although I still generally try to stay away from the area where my bone flap was reattached to my skull, I certainly never expected adjusting a baseball cap on my head would subject me to a stabbing pain!

Such was the case when I went to curve the bill of a relatively new baseball cap today. It was much more rigid than I was expecting and when I tried to curve it with my hand, a large chunk of it hit that dent where my bone flap sits.

The dent

One forgets, or certainly doesn’t anticipate, that area of your skull could potentially still be tender six years after that fact. Oh, I can safely it IS…at least in my case.

A dull ache in that area has remained the rest of the day and I’m sure I’ll feel it a tick as I try to sleep tonight. Laying on that side is always a little iffy. I just never expected to have that kind of pain this many years out. Maybe I’ll put some ice on it and see if that helps. It’s bad enough the bone flat recessed slightly and there is a dent now, but to still have it feeling like this is a bit discerning.

Words from the Past

I have been de-cluttering lately. Throwing out, or donating things that I haven’t used or looked at in years. If it doesn’t hold a strong, personal attachment, why keep it? The person who will have to clean up after I’m gone, won’t know if it was meaningful or not…or even care. If it’s taking up space and there is no sentimental value…get rid of it. Quite liberating.

Today’s wee task was a small basket filled with greeting cards. I remembered they were mostly “Get Well” cards from my craniotomy in 2014, but also forgot it was shortly after the loss of my other sister Rhonda. So, there was a mix of sympathy and get well soon cards. Odd.

Many were from co-workers, distant friends, and relatives who had heard about my surgery. Some were very poignant and meaningful and others were funny and distracting.

One such card was from my own mother. She always found THE best cards. Once card I received while recover in the hospital from my ruptured in 2006, was the perfect card for me. A painting of the sun sitting in a bath tub — one of my favorite pastimes. The writing on the outside simply said “The Sun’s Day off”. I have it framed in my office at home.

The card I stumbled across today from this surgery was so MOM. Funny, unexpected, and unique…just like she was. Even more shocking was the expletive inside. 🙂 But I LOVED it. It made me smile and laugh then, and it did so today when I reread it.

Little did I know that just 9 months later, I would also lose my mom. So, finding these cards is very, very bittersweet, but this one made me smile and laugh out loud! I “had fun” with this card, which is what she always used to tell us. God, I miss her.

Since that time in 2014, two of my co-workers have been lost due to cancer. Both were devastating blows and they were taken far too soon. Seeing their names and words was moving especially knowing how they would both struggled with their battles against the horrible diseases that overtook their bodies. I hope I was able to give them the same kind of support and comfort they gave me.

One such card was a beautifully penned, simple note from our photographer John. My sister Rhonda has just passed away and he had read about it on my brain blog. He comes from a large, loving family and his words about pain, loss and family meant the world to me then…and still do today.

I vividly remember that day like it was yesterday. I came to work and found a small orange envelope sitting on my desk. As I opened it and read John’s words about losing my sister, they hit my like a ton of bricks. After my eyes welled up with tears, I immediately walked over to his cubicle, thanked him for the card, and we hugged, held each other, and cried together.

John was also dealing with his own demons fighting cancer. Knowing how precious the time we have on this earth is, for him to take the time and acknowledge the pain I was going through while he was enduring his own fragility being the father of two young girls, meant even more. I miss him every day at work. He was a special, special human being.

All of these cards gave me strength when I needed it and gave me strength reading them again. Grief and healing went hand-in-hand during that period of my life. Neither were easy. I struggled with proceeding with the brain surgery such a short time (2 weeks) after losing my sister. I didn’t want to put my mother and my niece through anymore worry and pain. THEY were the ones who told me to go forward with the risky surgery. And it turned out it may have saved my life.

I thank those who sent cards. No one visited me at home or in the hospital, but the cards meant a lot and made me feel less alone in the world – even for a short time. THANK YOU!

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.