Tag: healing

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.

Stop and Visit

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Each year of our KAT-Walk and Karo-5K I have been at the tent representing the Maine Brain Aneurysm Awareness committee, only leaving it to help other volunteers if needed or if I am participating in the walk itself. Before, during, and after the event, we try to provide people with support, information, and education about brain aneurysms.

SURVIVORS:
If you’re a survivor, like I am, we encourage you to make yourself known at the event by stopping by our tent to say “hello” and to sign in. Each year we’re very encouraged to meet new survivors as well as those who survived an aneurysm many years ago and choose our event to celebrate the fact they survived. We are also very aware some survivors don’t want to draw attention to themselves or make a ‘big deal” out of it, but it IS a big deal. Brain aneurysms kill too many and if you survived a rupture or were lucky enough to have your aneurysm treated before it ruptures, then you’re very worthy of attention at our event.

Please stop by, say “hello”, and sign in. Not only is it a wonderful feeling to know you’re not alone, but seeing, and getting to know another survivor can give newly diagnosed or treated survivors a tremendous amount of encouragement and comfort.

NEWLY DIAGNOSED
As our Brain Aneurysm Support group continues to draw new members, we’re also very aware there may be patients who have been newly diagnosed with a brain aneurysm. Hearing those words can be extremely frightening, especially if one has no idea what an aneurysm is. It’s only AFTER you’ve been diagnosed and seen at the doctor’s office that the questions seem to present themselves.

At our Brain Aneurysm Awareness tent we can provide you with informational booklets and brochures to help you on your journey. The types of brain aneurysms, different treatments, and what to expect after treatments are all part of the learning process when you begin your brain aneurysm journey.

Also at the tent you’ll meet other survivors who can help answer some of your non-medical questions and hopefully ease some of your fears.

THE WALL OF HONOR
Two years ago we started the Wall of Honor where families can place the name of a loved one who has been lost to an aneurysm or the name of a survivor.

If we are aware a survivor is registered for the walk or run, we try to have their name pre-printed and placed on the wall prior to the event, but each year we meet new survivors and we welcome you to visit the tent, write your name on one of the colorful sneaker stickers, and place your name on the board. You survived…you deserve a place of honor.

Wall of Honor

If you’ve been unfortunate to have lost a loved one or friend to a ruptured brain aneurysm, we also welcome and encourage you to remember them with a place on our wall. As with the survivors, if we know family members of one who was lost are registered for the walk or run, we try to honor their memory with a pre-printed sneaker sticker on the board, but if you’re new to the walk and want to honor your lost loved one, please stop by the tent, write their name on a sneaker sticker and proudly place it on the wall to honor their memory.

We try to keep it to one sneaker per survivor or loved one. If the name you’re looking for is already ON the board, we have seen other family members and friends taking pictures with the sneaker with their name on it. The Wall of Honor has become an emotional place for some and a proud place for others. A true brain aneurysm community develops on the day of the event and it gives one hope, comfort, and encouragement.

 

SUPPORT COMMUNITY
Next to our Brain Aneurysm Awareness tent we will have a tent set up for the Maine Brain Aneurysm Support Group.  For those who are unable to participate in the events, we welcome you to rest here and enjoy the festivities with other survivors and family members.

 

Gravity

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Since my craniotomy brain aneurysm clipping surgery in January, I have slept at an angle with a large, decorative pillow behind my regular pillow. I decided to try sleeping with a regular one instead and realized I guess I can’t sleep that low. I was kind of surprised.

I had trouble getting to sleep the other night. My skull was “acting up”. I have yet to find the correct word to describe how it feels. It’s not hurting per say, but it feels strange and kind of aching and disarming. Almost like someone is squeezing my brain, or at least the tissues around my brain. I’m sure it’s just all of those layers of tissue continuing to heal after being cut apart and pealed way from my skull, but laying down flatter certainly made it more prevalent.

Gravity was not my friend. I tried to get comfortable. I always start to sleep on my right side anyway, but even that wasn’t very comfortable. I rolled over and that didn’t help, even when I tried to position the pillows so they weren’t touching my head in that area. Which is NOT easy, trust me! 🙂

So, I grabbed the large pillow again and positioned that behind my head and that helped…or at least psychologically it helped me. I’m not sure if this is just part of that healing and recovery process or if laying lower really created that discomfort. I had the same discomfort driving home from work today. I know I can’t blame that on gravity as I don’t normally lay down while driving! I think they frown upon that.

Dave has urged me to take advantage of our medical personnel presence at the brain aneurysm support group this Friday to ask her if I should be concerned or if that’s just a normal part of the healing and recovery. I just wish I could describe the feeling better.