Category: Family

Living with and surviving brain aneurysms

Too Many “Firsts”

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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.

2014 KAT-Walk & Karo-5K

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It was chilly for September, even for Maine, and the winds weren’t exactly relaxing but the annual KAT-Walk & Karo-5K held last Saturday was a terrific success! At one point I said the words “My heart is full” to myself after looking out at the many, many people filtering in throughout the brisk morning.

Team Nolan over 160 strong!Over 600 people attended the walk and run this year. We’ve never had that many. Granted there was a busload of school kids and we certainly can’t expect, or rely, on those exact people to attend the following years, but it was great to have that kind of show of support.

To me it never really is about the money raised, but the physical show of support seen on the day of the event. You can’t get that warm fuzzy feeling from a check. You can’t share a hug with a credit card charge. And you can’t feel the sense of accomplishment after finishing the run or walk from a $10 dollar bill.

That being said, we DID raise over $30,000 this year! We are also very proud that the “Maine’s KAT-Walk & Karo-5K Chair of Research” was one of eleven research grants totaling $230,000 awarded at The 8th Annual Brain Aneurysm Foundation Research Grant Awards Symposium. The event was held on Thursday, September 11, 2014, in Miami, Florida.

Our 2014 Chair of Research was awarded to Koji Hosaka, PhD, Dept. Neurosurgery, University of Florida. He is working on identifying proteins that can be coated to the miniature coils used in the repair of Brain Aneurysms. It is anticipated that these compounds will be effective to promote healing and shorten recovery times and complications.

Now, back to those warm, fuzzy feelings. Every year, I’m always struck by the people who show up to support someone who has lost someone or to support another survivor. In fact, at our monthly support group, instead of saying “caregiver”, we voluntarily started calling them “supporters”, which I like much better. There are also many people who attend from out of state.

Two such supporters and fellow brain aneurysm survivors, I had met previously and was honored they came to our event. One was from Florida, via Pennsylvania and the other from New Hampshire.

It was nice to actually walk with someone this time! Lori is a walking miracle surviving multiple brain surgeries & a stroke. With the help of her service dog Tober and her husband Ralph, we were a great walking team and they kept me on stride for probably my best time ever. Yes, I was sore and tired afterwards, but I needed to keep up.

Julie has come to our walk in the past and was a huge help at the brain aneurysm awareness tent getting names and greeting other survivors. Julie has had several struggles with other medical issues including breast cancer and she remains an upbeat proponent of being your own advocate for better medical care. We had the same doctor coil our ruptured brain aneurysm in 2006 about 3 or 4 months apart in Portland, ME.

The three amigos had a grand time afterwards giggling like little girls and celebrated the day with a drink. I enjoyed their company tremendously and was thrilled they joined us and me. Again…it’s that show of support that can mean so much to so many.

The endless hours of hard work put in by so many volunteers is all worth it when we see the outpouring of support to raise awareness for brain aneurysms.. My husband, Dave, had a “To-Do” check list that had over 800 items to be completed. I know his niece Kim would be so proud of the work he is doing and would be embarrassed that an event was named after her. I also KNOW she’d flash that fabulous smile seeing the efforts put forth, and know she’s right there beside us the entire way trying to raise awareness about the silent killer that took her from us.

I believe this event would not be as organized, or look as good (flags, tents, signs, etc) without Dave putting in endless hours of contacting survivors, supporters, and sponsors. I hope people who attend realize the personal contact Dave, and other volunteers, have made to make those who attend the event feel welcomed and comforted. I seriously doubt other walks/runs have that kind of personal communication from an organizer. Not only is Dave MY biggest supporter, but he’s trying to support everyone else touched by brain aneurysms. He knows…he’s been effected in multiple ways by them and I love him for his passion and endless drive to make sure the events go off without a hitch (even checking the tides!) and it looks amazing. We actually don’t see much of each other during the event. He and I have to catch up on the day on the long drive home afterwards with the trailer loaded up with the “circus”.

I also realize the event was overwhelming for me this year. I was extremely tired after the walk. I AM just 8 months out from open brain surgery, and there was a LOT of mental and visual stimulation all day. Speaking to many people, walking, taking pictures, unpacking boxes, re-packing boxes, not much food, and being overly tired from work. It’s a shame no one FROM work was there to see the event we have worked so hard to produce and give me some support. But, I’m blessed to be included with the over 20 survivors who attended the event with THEIR supporters. I had my sister Dori and Kim on my mind and walking for them and myself was a privilege. Good for me! 🙂 It was nice to cross the finish line with someone who knew I had actually crossed the finish line and we gave each other a high five and a hug.

Trailer and car Unloaded at seaside
The trailer & car all packed up and ready to go! Trailer unloaded at Back Cove
Tents set up Dave addressing the crowd
It all turns into this! Dave addressing the crowd at start of race.
The View from Starting Line 20141004-225415.jpg
Great shot of crowd gathered at start/finish line Lori and I just crossed the finish line
20140920-232025.jpg Wall of Honor
Julie, Lori, Tober, and myself The Wall of Honor
My sister's sneaker My sneaker on the honor board
My sister’s sneaker on the wall of honor My own sneaker on the honor board

 

It Has Been A Week

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I have been close to tears about five times this week. None of these times actually produced tears, mostly because two of the times were at work, so I really kept it in, but the other times certainly could have produced tears….but nothing.

Since my brain aneurysm rupture in 2006 I noticed whatever mechanism within my brain that triggers tears, just isn’t the same. I would feel sad about something, and knew I would normally be crying over it, but the tears would not come. I’d be curious to know if any other brain aneurysm survivors have experienced the same thing. However, when those tears DO start flowing it’s difficult for me to shut them off and they completely drain my body and brain of any needed functionality.

Tonight I opened that valve and the tears are flowing. This Sunday is Mother’s Day. Normally a happy occasion for families to celebrate their moms with gifts and spend time with mother’s, granddaughters and grandmother’s. Unfortunately, for my family, it’s a sad occasion and doubly so this year. No, my mother hasn’t left us, but both my sisters have. So not only has a mother lost two daughters, but I’ve lost both my sisters and my niece and nephew have lost their mothers.

My sister Dori had a massive ruptured brain aneurysm ON Mother’s Day in 2012. My husband and I were in London, England when we found out. We cut our trip short to join my family in a two-week, hopeful vigil praying for a miracle that never happened. Technically, we had already lost her on Mother’s Day. I don’t know how my mother or my sister’s son, can ever replace that memory. I know I can’t. Because she died of a brain aneurysm, I’m also tormented by my own demons about how she was misdiagnosed and how I should have pushed her more to insist the Dr’s look closer. Having the “urgent care” president where she was treated admit in a letter, after her death, that aneurysm signs were missed, makes it even more heart wrenching.

My “Family” mailbox in my Email now only consists of my husband and my niece. No other relative emails me. In fact I didn’t even know my cousin’s husband had died because she didn’t email me and none of her brother’s or sisters did. I miss my emails from Dori and Rhonda and Mom. Since mom had to switch to a laptop from WebTV, she hasn’t been able to understand and grasp using a computer, so we no longer have that convenient form of communication. She doesn’t call me, due to the cost, but I call her two times a week. And as I sit here typing this, I am bawling and feeling horribly pain in my head, that is just short of 4-months out of open brain surgery to repair my 2nd aneurysm.

Searing pain around the side of my head that is made worse by the stress of crying…and I can’t stop. I want, and desperately need a day off of work to get some sleep and rest, but there are meetings I must attend. Why I’m asked to attend some of these meetings, when my ideas and recommendations are met with a giant eye-roll and dismissed, is something I don’t understand. Even though I was apart of developing the program that’s being discussed and am very familiar with how it works, being treated that way in front of many others (for a 2nd time) can lead to tears, but I held it together…until now. So on top of grieving again for my sister, I’m dealing with being dismissed at work and just getting there on a daily basis while I’m still recovering.

Then there is my darling niece who will have to endure her first Mother’s Day without her mom because my other sister Rhonda died just 4 months ago. My poor mother has lost two daughters and I’m all she’s got left. And even SHE is having issues right now with horrible pain in her back, which brings back many memories of my sister Dori. She had horrible back pain for months before finally having surgery a few weeks before her death and I’d talk to her on the phone as she was in that pain and knew she had been crying due to that pain.

So when I hear my 87-year old mother talk about getting to the point where the pain makes her cry, how can I NOT think about my sister. I don’t know what to do to help my mom when she’s in NY and I’m in Maine. She’s been to two doctor’s and they’ve given her patches and some meds and told her to stop lifting things. Great. That’s great advice…but do they know what is actually wrong? I doubt it.

So, that crying thing is very difficult. We’re told it’s good to cry every once in awhile to get it out of your system….they say it’s a “good cry”. Well, for me, a cry is never good. My head feels like the skin and muscles are being pulled away from my brain right now. And it won’t settle down, until I settle down. Poor Dave has tried to console me, but I don’t even know what I need. I guess a “good cry” and venting in my blog will have to suffice for now even though I know I won’t feel any better physically or mentally afterwards.