15 Years and Counting

15 years ago today my first brain aneurysm ruptured. The previous day, I had just finished the initial layout for the entire catalog. What a huge relief to finally know it would all fit after a stressful five months. I still had a great deal of work to do yet on the catalog, but my brain had other ideas on that chilly October morning.

I am still around today for several reasons:

  • My bleed didn’t kill me instantly
  • I listened to my own body and had Dave take me to the ER
  • The quick work of the attending physician at Maine General who immediately sent me in for a CT scan where the blood on my brain was detected
  • The high-speed and safe driving of the EMT ambulance squad who got me to Maine Medical Center in record time
  • The skilled hands and eyes of Dr. Eddie Kwan who performed the endovascular coiling on my 1/2” brain aneurysm the next morning
  • The compassionate, and hard-working nursing staff at Maine Med who attended to me for 21 days
  • The many prayers from my family and friends
  • My Maine man, whose constant care and attention gave me the strength to get up each morning

Dave, my rock, my constant companion for over 20 years. I am so fortunate that I was discovered on AOL by this GOOD MAN in 1998. Not only am I amazed, blessed, and thankful by the care he provided ME while in the hospital and in recovery, but also by the time and attention he pays to other survivors we have met over the years. The world, and MY world, is a better place because of you, Dave. THANK YOU!

Brain aneurysms don’t discriminate and my story isn’t unique. There are thousands of people just like me around the world. Brain aneurysms don’t care how old you are. They don’t care what race, gender, political leanings, or financial situation you are in. A ruptured brain aneurysm can happen to anyone.

Although I started sharing my story on https://heidisbrainblog.com as a way to keep my family and friends updated on my recovery, it became a therapy of sorts to fight my way back, relearn the computer, hand-eye coordination, and connect with others going through the same thing.

It was wonderful to discover I was not alone and others were going through very similar struggles. I’m so thankful to the other survivors I have met over the years. Each of their stories have touched me and given me strength.

I am not a glorious survivor. I haven’t run marathons to prove my incredible physical strength, or started podcasts proclaiming a new-found energy and awareness for life. I haven’t shown the world my face on tons of YouTube videos (okay, I have a couple out there) or written a book, but I am surviving every day….and I think that’s pretty damn good.

15 years…and counting! Happy annie-versary to me.

Lending a Hand

We spent the day yesterday down in the beautiful coastal town of Wells in the southern Maine attending a fundraising event for a Well’s resident who suffered a ruptured brain aneurysm in March.

Due to Covid19, our MBAA group have not attending any of our usual brain conferences, fairs, and support events since March of 2020. So, we were looking forward to pitching our tent once again. And hugging! There was hugging!

About two weeks ago, I saw a news report on TV about fundraising efforts benefiting Bob Hoffman, who along with his wife, and another couple, own and run the Living Wells Farm, a horseback riding and boarding center. Bob suffered a serious brain aneurysm rupture in March and continues to heal with rehabilitation therapy at home.

Once we saw Bob’s story, we wanted to make sure he and his family were being looked after and had all the information and medical assistance they needed during this critical recovery period. The #BobStrong Fundraiser offered the opportunity to introduce ourselves and offer our help in anyway.

A small segment of the #bobstrong team

We contacted Katie from CrossOver Fitness Maine who, along with her husband Andre, were organizing the event for Bob at their fitness center in Wells. Thankfully, there was a quick response which also led to Bob and his wife attending a timely brain aneurysm support group meeting with us over Zoom this past week.

It’s so important for survivors and their caregivers to know they’re not alone during these critical periods of after-care and healing. We were really please when Bob and Amanda showed up on our computer screens for the support group.

Everyone is different. Every aneurysm is different. And everyone responds to a ruptured brain aneurysm differently. Some are receptive to help, others can walk out of the hospital on their own and never look back or look into what may have caused the aneurysm and how it has effected their brain and their families. You can lead a horse to water, but you can’t make him drink. You can lead a survivor/caregiver to a support group, but you can’t make them share their story or be open to receiving assistance and education.

Thankfully, Bob and Amanda were receptive to our group and were engaged and open with us. We were also highly impressed with the path to recovery Bob is currently on and the services he has been offered through some very tenacious efforts by Amanda and their rehabilitation center, Rehab Without Walls.

Yesterday’s fundraiser was a beautiful example of a community coming out to support one of their own and how they have wrapped their arms around this young family in their time of need. We met Bob’s parents and children and some of the good friends helping the family on their brain aneurysm journey. I am reminded, yet again, how the physical brain aneurysm happens to one person, but the entire family suffers the results as they are often confused and scared by all they have seen.

Our group tries to assist survivors and families in understanding the recovery period and what one can expect. We NEVER give them a timeline on when their recovery will be complete. No one can tell you that. But, if you put in the time and educate yourself on how best to help the survivor, it can make that journey easier and perhaps quicker to achieve better results.

Dave and I were joined by two of our committee members, Amy and Linda for the day and we were impressed by the over 200 people who participated throughout the day and brought such a loving and caring attitude. We were asked many questions and met a few people who had also been touched by brain aneurysms in their own families.

Linda, Dave, Heidi, Amy, and new survivor, Bob

Bob is a very fit and strong individual. Both of those traits should benefit him greatly during recovery, but it’s not a quick process. Reading my own blog from my first few months is a quick reminder of how frustrated and depressed I got. Having that strong support group around you is a huge benefit and I think Bob is one very lucky man after what I experienced yesterday.

Spending the day with Linda and Amy also allowed us some catch-up time and the chat was mostly about our experiences with brain aneurysms and our combined efforts in the state to educate people. I have something in common with both of them: Amy is also a survivor and Linda lost two loved ones to brain aneurysms – both of her parents. It’s interesting how easy it is to discuss these difficult topics when you know the person you’re speaking with has also endured similar difficult experiences.

Linda, Dave, and Amy

It felt GOOD to be out there doing GOOD again. It felt GOOD to load up the car, pitch that tent, lend a helping hand where we could, and hug people again.

#bobstrong

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

The Families

Since 2006 when my first brain aneurysm ruptured, Dave and I have come in contact with hundreds of families effected by brain aneurysms not only in Maine but throughout the country. Although some friendships and communications have varied in frequency as they have weaved their way through our lives over the years, their stories remain with us.

We shared last nights annual Dance for Brain Aneurysm Awareness fundraising event with many of those families. Today, I am reflecting on just how vast the brain aneurysm community is. Not only do Dave and I have contact with survivors and those who have lost a loved one, but we have met and become involved in the lives of their family members as well.

Learning how brain aneurysms effect an entire family is a part of OUR lives through the work we do with our group and each story effects us.

Last night I danced for the first time with a fellow survivor we’ve known for several years. He is a walking miracle. His recovery from a severe brain aneurysm rupture is remarkable. Learning to walk again, overcoming dramatic emotional struggles, and a memory pathway that is forever changed. I’m pretty sure I never stopped smiling while dancing with Dan for many reasons: he is a survivor, he is a fantastic dancer, and we have gotten to know his wife and young children. We know his life now. He is a part of our extended brain aneurysm family.

Everyone’s struggle is different, but the cause is not. Brain aneurysms can rip a family apart or bring it closer together. Dave and I have experienced both of those results with many of the people we have met and as a result we also begin to care and worry about their family members. We now know their children, their siblings, their grandchildren, their parents, their co-workers, and even their pets.

Some people have a massive amount of support from family and friends while other’s are not as fortunate. We hope those who don’t have that larger support system feel a sense of community and encouragement when spending time with others at our events. It’s vital we show them they’re not alone in their struggles.

With relatively new “family” member and brain aneurysm survivor, Carol.

The date of our annual Dance for Awareness is not by accident. The birthdays of two young women lost to ruptured brain aneurysms fall around this time: Kim Tudor, Dave’s niece, and Karolina Kurka.

Karolina’s family, during a time of intense grieving, came to our walk only a few weeks after losing Karolina. Since then, their family has joined ours in raising awareness and bringing their friends and extended family into the fold.

Each year after the dance, a small, solemn, informal ceremony takes places outside in the parking lot. A release of balloons, in the colors we use to represent Kim and Karolina, are released to the night sky into the heavens to honor them both on their birthdays. Some years it’s a small group, other years, it’s a larger group, but it’s always meaningful to the family and friends of these two young girls taken far too soon. This year, Kim’s mom Nancy, and Karo’s mom Mira, released the balloons.

One shouldn’t be afraid to celebrate the lives of those lost. It is very easy to let the tragedy and grief of their deaths overshadow the joy of the years we DID have with them.

I thank all of the families of those we have met over the years for inadvertently reminding me that it’s okay to remember the family members I have lost. It’s okay to celebrate their lives through OUR lives and it’s okay to allow someone else to love you and support you. THANK YOU!