Category: Family

A Compelling Story

Published on by heiditea1 Comment

“You need to have a compelling story.“ That’s what we’ve been told our group (Maine Brain Aneurysm Awareness) needs in order to get some local television coverage. Webster’s dictionary’s definition of the word “compelling” is:

: very interesting
: able to capture and hold your attention
: capable of causing someone to believe or agree
: strong and forceful
: causing you to feel that you must do something

So, apparently no one feels the following examples are compelling enough to warrant at least one television or newspaper interview in the last 6 years?

  • A vivacious 32-year old died suddenly in her bathroom of a massive ruptured brain aneurysm three days after Christmas. She lived alone and was found the following morning by her devastated mother. (The KAT-Walk was created in her memory & honor)
  • The husband of a ruptured brain aneurysm survivor also lost his niece and sister-in-law to ruptured brain aneurysms.
  • A woman from New Hampshire was vacationing in Maine and suffered a ruptured brain aneurysm in Shaw’s Supermarket. After a misdiagnosis, she eventually went to Maine Medical Center where the only interventional radiologist in the state saved her life. A few years later, she also survived breast cancer and a double mastectomy.
  • A man suffered a ruptured brain aneurysm while home alone. After many hours, his young children discovered him after coming home from school. Two hospitals and a trip to Boston saved his life.
  • A 40-year ruptured brain aneurysm survivor had to be taken to Canada.  At the time of her rupture, no one in the northeast did brain surgery for aneurysms then. The original clipping failed and she was re-clipped. Which means multiple craniotomies. She is a walking miracle.
  • A much-loved 53-year old woman died of a massive ruptured brain aneurysm on Mother’s Day after presenting symptoms two previous visits to doctors, leaving a husband and a 15-year old son behind.
  • A beautiful 28-year young woman, who was an active runner and very physically fit, suffered a ruptured brain aneurysm while working out. She never recovered leaving her family devastated. She was to be married only a few short weeks after her death. (The Karo-5K was created in her memory & honor)
  • One woman survived a ruptured brain aneurysm that was filled with 11 coils, only to lose her sister to a ruptured brain aneurysm six years later. Then Dr’s discovered she also had a second brain aneurysm which was clipped via a craniotomy, but the original one that ruptured is still giving her cause for concern 9 years later.
  • A father of three survived a devastating ruptured brain aneurysm. The deficits he and his family have faced are life-altering and difficult but he IS alive and living life to the fullest.
  • A woman’s ruptured brain aneurysm at 4 a.m. left her with limbs numb, speech slurred, a rapid heart rate, sweating, and falling to her knees. The EMT’s who arrived at her home took her blood pressure and asked some questions. They determined it wasn’t a serious issue and left it to the patient if she wanted to go to the hospital or not. Thankfully she went on her own and the Dr. in the ER sensed what it could be and had her scanned and transported to Maine Med where her life was saved.
  • A young, talented, 13-year old boy fell victim to a ruptured brain aneurysm in his home. The outpouring of grief and support after his death was overwhelming. (Nolan’s H.E.R.O. Foundation)

I could go on and on if I knew I could accurately describe the situations of everyone that I have met. So many stories of hope, fear, disaster, strength, and courage.

So…apparently none of those stories are compelling? How many people have to die and suffer debilitating deficits before this cause it compelling enough to the local news media? To those whose lives have been touched by brain aneurysms there is plenty to hold one’s attention. Survivors HAVE to begin to believe they’ll be fine or they’ll crumble. And in many cases of those left behind, the desire to DO something is overwhelming after these silent killers attack without warning in some cases. Our fundraising events do more than raise money to help other families, they raise the hope and spirits of those left behind or those surviving.

We were lucky enough to have a lovely article written about Kim after her passing. It was written in the local sports section because she was a fantastic softball player, but beyond that, we have received little to no local media support focused solely on our cause. It’s not for our group’s benefit…it is to raise awareness and to allow others who have been touched by brain aneurysms to gather and support one another.

Our cause doesn’t have a specific color that we brand; doesn’t have a celebrity spokesperson that everyone adores; or a social media “challenge”. The more we’re able to talk about brain aneurysms, the more awareness will be raised and hopefully we can SAVE A LIFE.

I think that’s pretty “compelling” don’t you?

READ MORE About Us: MaineBA.org

It is estimated that up to 1 in 50 people in the U.S. will develop a brain aneurysm during their lifetime. Each year about 30,000 people will suffer a ruptured brain aneurysm. Almost half of the victims will die and of those surviving, only one third will recover without disabilities.

Heidi's Brain Blog

Reminders

Published on by heiditea1 Comment

Our monthly brain aneurysm support group meetings are a wonderful way for survivors, their supporters and for those who have lost loved ones to come together and discuss this horrible thing that connects them. The fantastic medical professionals who have come to speak with us have opened the eyes of those who haven’t been educated themselves and have helped supporters gain a better understanding of what their loved one has gone through. I rarely come away from the meetings feeling anything other than positive energy and proud of the group, but tonight was different.

Dori and I in Maine Three years ago tomorrow, we had to say goodbye to my sister Dori. Her rupture was massive and deadly. She ruptured on Mother’s Day and was kept on life support until the 29th of May. No signs of life and no signs of recovery were recorded. They had shaved her long, thick, mostly gray hair from her head completely. She was on life support, a ventilator, and had a drain set up to alleviate and remove fluid on her brain. It’s an image that still haunts me as the last time I saw her.

Some of our discussions this evening at the support group centered on drains and locations of brain aneurysms. Dori’s aneurysm ruptured on her brain stem, which was catostrophic. As these discussions took place tonight with a survivor who had a drain and a rupture, the image of Dori in that hospital bed was running on a loop in my head. I’m glad we flew back from London immediately to see her at the time, but it technically wasn’t her in that bed. She really was gone the day of the rupture but I see her in that bed this week and my heart hurts because I miss her so very much.

I know for those who have lost a loved one, the support group can be sad, educational and scary all at the same time. Usually I’m naturally focused on the survivor side of it because I am one, but unfortunately, I also have the flip side as part of my life in losing my sister and Dave’s niece to massive ruptures. The successes (me surviving I guess) don’t quite balance out the failures (losing Dori and Kim) but life still goes on around us and I’m still alive to try and help others if I can. If we’re able to get one person scanned or help one survivor understand their situation better and offer comfort, then those lives lost will always be with us as a reminder at how precious life is and how we all can DO something.

Living with and surviving brain aneurysms

Too Many “Firsts”

Published on by heiditea2 Comments

As the holidays descend on me, it’s another group of those dreaded “firsts”:

  • The first Thanksgiving without my mom and my other sister.
  • The first Christmas without my mom and my other sister.
  • My first birthday without my mom and my other sister.

Unfortunately, I’m no stranger to those “firsts” after losing a loved one, but it never gets any easier and it’s always a struggle to know how to behave during festive times when you’re dealing with loss. Each loss has provided me with another new chapter or phase that one must get through. Yes, I’m tired of it. Enough, God! I’m tired. Give me a break.

I’m thankful we drove to NY last year for my 50th birthday and for Christmas. As it turned out, it was the last time I saw both my sister and my mother. I’ll be thinking about that this Christmas. It will make me sad and I’ll probably not look at the photographs we took last year for some time.

My wedding photos have been difficult to look at since the death of my sister Dori in 2012, but now my other sister Rhonda and my mother will be two more “ghosts” that will haunt me when I look at the photos. I know that’s the wrong way to think of it, but they make me sad. I wonder how long it will take me to look at those photos and not be sad. It was such an incredibly fun day and we all had such a fantastic time.

I don’t have a group of friends who come and visit me and check on me and take me out for fun things to do. I don’t have close friends who make me wonderful comfort food when I’m having a hard time. As it has been since we lost Dave’s niece in 2008, it’s just Dave and I here on the stream. We rely on ourselves to be each other’s rocks and it’s a hard burden to bear for both of us. How much can we say to each other after each loss? We do the best we can and we take strength from each day we’re here to spread the word about brain aneurysms. We have to. It’s all we can do to truly honor Kim and Dori’s memory – trying to save another life.

I’m tired of planning services. I’m tired of losing the people I love and I’m tired of grieving…and yet, I have more to do yet. Granted, I haven’t spent every Christmas with my mom since I moved to Maine in 2000, but we have made it back to NY every couple of years to spend the holiday with her. I miss her voice. I miss her laugh and her wacky sense of humor. She’s irreplaceable and I knew the day would come when we’d have to say “good-bye”, but I hadn’t expected it when it happened. Grieving can suck the life out of you, but I have more life to give apparently and God keeps testing me. I wish he’d stop…I’m good! Really! Oh, and by the way, while we’re at it God, my own brain aneurysm angiogram checkup in January needs a clean bill of health, okay?

So, this Christmas I haven’t decided yet if I’ll put up our Christmas tree. I love Christmas. I love Christmas carols. I have listened to carols for a few weeks already, which was a big no-no in our household growing up! Mom refused to let us play Christmas carols on the piano until after Thanksgiving. The only exceptions was music we had to rehearse for band concerts because we usually started rehearsing those earlier in November. Rhonda played clarinet, Dori the saxophone, and I played the clarinet and piano. I supposed I love listening because they’re familiar, comforting tunes and I know all of the words. 🙂

I remember we couldn’t WAIT to get the Christmas books out after Thanksgiving. I found one of those old piano books at mom’s apartment in NY. I may pull out the electric keyboard and see if I’m still able to tickle the fake ivories in honor of my mom. We’ll see. I think I want decorations, I just want to take the time and effort to do it. LOL I need those Martha Stewart elves to come in and beautify my house for Christmas.

One extremely sentimental item I WILL be placing out somewhere, are the old manger pieces from the manger we had growing up. The physical manger is long gone, but the ceramic pieces that went in it have been securely wrapped in newspaper every year since I was born I think. They were even in the original box in my mom’s apartment, which blew me away. Putting out the baby Jesus was something mom always made a big production of. We HAD to put him in the manger last and could not unwrap him from the newspaper until everyone else was in their proper positions.

So, perhaps this year, in honor of mom and Rhonda, I’ll put up the manger, I’ll pause to position the baby Jesus just so in the middle of the manger, and try to be happy and smile. And I should also take a note from the Moms Eulogy FINAL (<–PDF) and read at my mother’s service and “Have Fun!”. I’ll try…I’m trying.

2014 – Be Gone!

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This year was already one I was looking forward to being over. Just three days into the year, I lost my other sister Rhonda and because I was scheduled for brain surgery just a week later, I never made it back home. There wasn’t an immediate service and my niece and mother insisted I go ahead with the surgery as planned.. So I did.

Little did I know on Christmas 2013 when I spent my 50th birthday back in my home town, that it would be the last time I’d see my sister Rhonda AND my mother.

As I was just hoping to make it through the catalog process in one piece and with intact brain function, my mother suddenly passed away. She had been ill for a few weeks and had been in the hospital twice, then seemed to be doing okay at a rehab facility. So, it was shocking on a Saturday morning when she passed. Her blood pressured dropped, she became very ill and in the blink of an eye my beautiful, vibrant mother was gone. She was 87.

Because her death occurred a week prior to catalog files having to go to the printer, Dave and i were able to leave Maine immediately and drove to NY for only a few days to make arrangements and scope out the situation at her apartment. Then, as plans for a memorial service were being finalized, I had to come back to Maine to get the files out. I suppose being so busy when I came back helped me kind of block it all out, but not really. We still had to go back for the memorial service and get her apartment cleaned out.

In the span of less than two years I have lost both of my sisters (one to a massive ruptured brain aneurysm) and now my mother. I’m now parentless and an only child. As my mother and I discussed many times since both of my sister’s deaths, it was becoming increasingly difficult to recall events and people with any certainty without corroboration from either one of my sisters. Mom and I relied on each other for that.

Planning my mother’s memorial service was difficult from a distance, but I think, no, I KNOW, we did her justice and I know she would have been smiling. We had a little bit of fun at the service and that’s what mom was all about: laughter and fun. I doubt my home town has ever seen the likes of my mom’s memorial service. The dixieland band was a smash hit and a special request directly from my mother.

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Sister Rhonda, niece Jenny, and my Mom last Christmas 2013.

It was wonderful to see old friends and the many relatives that came out for the service. It’s just a shame it was under such circumstances. And through all of this, all I could think of was how I shouldn’t be doing this without both of my sisters by my side. That thought added to my grief and only made me miss them more.

My home town in New York has changed so much since I left there in 2000 and not for the better. Granted, it wasn’t a bustling, thriving town, but I look at it now, and it only brings sadness for what was. The house I grew up in was sold around 2004 and my mom began the last chapter of her life in a wonderful apartment complex. The old house has changed dramatically. Some of the changes are good, some….not so much. There are so many homes I used to admire growing up that have fallen into disrepair and almost unrecognizable as livable homes…and yet, they are! Even the street I grew up has changed. It used to be a lovely tree-lined street on a long hill. The trees became diseased and they all had to be cut down. It doesn’t look like the same street.

I know time changes everything and not always for the better. Driving around my home town made me sad in many ways. My father passed away in 1994 from cancer. I discovered some wonderful items of his I had never seen or read while cleaning out my mom’s apartment. They are now my treasures.

So, as I boxed up memories from my mom’s apartment, and brought them home to Maine with me, I am not looking forward to the holidays. They were going to be difficult anway due to the loss of my sister Rhonda, but now they’ll be doubly strange, sad, empty and tragic. I have to, yet again, get used to holidays without not one, but two relatives and your mom is a big hole that no one can fill.

I know I’ll get through it. Not much choice. It is what it is and our holidays haven’t been the same since Dave’s niece Kim died in 2008, again, just a few days after another holiday. Gone, are the fun family holidays where we played games, shared laughs and good food. We’ve done okay, its just far more low key than most people’s holidays.

Do I miss spending a Christmas with family and friends, of course I do. Does it mean I still can’t enjoy the holidays and enjoy christmas carols and holiday movies? No. I love all of that and I try to remember and honor those I have lost in some fashion. Whether it’s by lighting a special candle in the window, hanging that specific, meaningly ornament on the tree, or simply taking time to recall what that person meant to me I need to allow myself to FEEL their loss, but also celebrate their life. Easier said than done on some days, but my life won’t ever be the same without my mom….but liffe DOES go on and that’s something I know she’d be preaching to me.

My niece Jenny and I will move on and we’ll be okay. We’ve both lost out mother’s this year. We were blessed to have them in our lives and are both better people as a result and we should be thankful for that. So many people don’t have loving mothers, sisters or grandmothers.

I’m tired, sad, and a little lonely, but my husband, as usual, has been my rock and my salvation. Yes, I’m ready for 2014 to SO be over, but I look forward to the year ahead and creating new memories with Dave. We’re only given one life (or perhaps multiple ones, as my mother believed) and we should enjoy it and LIVE! So, bring on 2015, please.