Tag: healing

Balloons, Brains, and Bravery

Published on by heiditea4 Comments

The 2015 KAT-Walk & Karo-5K for Brain Aneurysm Awareness was held this past Saturday and the weather Gods, or at least our angels we call Kim & Karolina, were on our side.

Hot Air Balloon
The gentle rising of a hot air balloon greeted us.

We arrived at the Back Cove to see the sun come up, and as we were unloading the trailer, I noticed a hot air balloon slowing rising above the horizon across the bay. I had to stop and take a photo as I didn’t know which direction it was going. Thankfully, it glided right over our location and provided a stunning view of the extremely colorful patterns. It was fitting the bright colors were in our array of colors; the teal blue for Kim, the red for Karo, the orange for Nolan and blue and white for Scotland! 🙂

We were extremely blessed by warm, but not hot temperatures, low humidity, no rain and light winds. Some years the high winds can cause major issues with the tents, printed collateral, and flags.

The event was physically moved down to a location along the trail that allowed us to see more of the people involved. The previous years we were set up in a row along the gravel trail. Last year, we had no idea there were over 600 people there until the 5k started and they all gathered in one place. Once they registered, they became all spread out until that point. This year, our hope was to provide an area where the teams, families, and friends could gather and continue to be a “part” of the day with everyone else. I think we succeeded in that respect and some very positive comments were shared.

I’m usually set up in the Brain Aneurysm Awareness tent and get to meet survivors & their supporters who are new to the event and welcome those who have returned. We also try to provide comfort and support for those who have lost a loved one. I know we celebrate those who survived, but we also try to remember the reason many of us are there is because we lost a loved one to this silent killer. We did have a tender moment of silence to reflect on those lost in the opening ceremonies and many people use the honor board to gather and take picture’s with their loved ones sneaker.

Another good thing about moving the venue location was having the Start/Finish line directly in the vicinity of our tents. Those who finished early, could continue to be apart of the event and still cheer on those who crossed the line because it was right there.

Because Dave is so familiar with so many of the families and participants through his direct personal contact with them, he knows so many of the runners, walkers and their supporters. So, as he started to see some of them come across the finish line, he grabbed the microphone and started announcing them. I think that added a real special, personal touch. I know it was nice to have my name mentioned as I crossed the line all by myself again. Heidi McCausland….team of one!

DSCN1308
The Board of Honor where sneakers with a survivor’s name or one who was lost are placed.

Usually the most heartwarming and heart-wrenching parts of the day are when we meet random people who are coming to the event for the first time and are reluctantly coming to the tent to read more about brain aneurysms and who want to write their loved one’s name on a sneaker to add to our Honor Board. I met one women who was there to walk for her best friend whom was lost 6 years ago. This was her first time there and it was very emotional for her. I hope participating in the event and honoring her friend in such a way helped comfort her.

I also met another woman who had lost her sister two years ago and was just walking by and saw the signs for the event. She didn’t participate in the event, but came to our tent, signed in, made a sneaker out for her sister, and took a brain aneurysm awareness bracelet. No matter how we reach out and connect, it’s all important.

Last year’s event, which raised a record amount of money, helped fund a $25,000 Chair of Research through the Brain Aneurysm Foundation. The recipient of that award made the trip to our event to honor US and to participate. Not only did Dr. Kimberly P. Kicielinski make the trip from Alabama, via Houston, then Boston, but she participated in the 5K, received honors from our committee, made a speech, and then she and her boyfriend Justin helped tear down the event afterwards and joined us for an after-event party.

The work Dr. Kim is doing is very important. She is trying to determine the thickness and fragility of artery and aneurysm walls. Exploring this issue could result in saving many lives. If doctors are aware an aneurysm is at higher risk of rupturing due to a weakness in the wall structure, they could act and operate and save a life before a potential catastrophic rupture occurs. Dave had some wonderful communications with Dr. Kim via email prior to meeting her in person at the event and things she said and obviously has done and is doing, really struck a chord with our entire committee.

For me personally, after my 2nd unruptured brain aneurysm was clipped in January, 2014, the doctor said we dodged a bullet because the aneurysm itself was very oddly shaped and had a weak point at the top of it: something they weren’t able to determine UNTIL they opened up the skull and had physical contact with the aneurysm. Dr. Kim’s work could provide that information before they go into the skull. If I hadn’t made the preventative decision to have that surgery, it could have killed me…and sooner, rather than later.

I left the shade of my tent to participate in the 2-mile walk this year. I walked alone again. Many people pass me, some are way behind me, but I finished and was proud. I walked for myself, my sister Dori, Dave’s niece Kim, for my fellow survivors who couldn’t join us this year, Lori & Julie, and for all those who don’t have the support of co-workers, friends, or even family members.

The trail is a beautiful spot for a walk/run and Dave is always insistent that there be high tide during the event to provide the best possible view. Trust us…you don’t want to be walking there when it’s low tide. LOL Just not pleasant. The flags were waiving, the surf was light and the seagulls were chattering away.

Two special guests were Christine Doherty Kondra and Alison Sedney from The Bee Foundation, a national organization focused on research for brain aneurysms. It was wonderful they made the trip up from Philadelphia to join us and speaking to them reminded me of how important the national dialogue on brain aneurysm awareness is. So many people don’t know what a brain aneurysm is until they, or someone they love, is affected by it. Alison lost her daughter, Christine’s cousin, on Christmas day to a ruptured brain aneurysm and just like all of us who participate in the event on Saturday, she too, has decided to DO something. The efforts of The Bee Foundation not only raise awareness, but provide critical medical research. It was great meeting them.

Every year we try and try to get some local television coverage of our event. Local news can cover a story such as the new Passy Pete, the lobster that can predict six more weeks of summer, but we’re unable to get them to cover our event? I just don’t get it and it’s very, very disappointing and depressing.

However, this year committee member, and co-founder of the KAT-Walk, Art Piteau, did a wonderful radio interview that aired the morning of the walk on the Derek Volk Radio Show on WLOB radio 1310. We will definitely use this resource in the future and Art did a great job on a subject he’s very passionate about because he adored Kim and was a large part of her life. HEAR AUDIO INTERVIEW>

We were also blessed to have a wonderful article written by Harrison Thorp for The Lebanon Voice newspaper. He was at the event with his partner Martha who was a very recent brain aneurysm survivor having had a craniotomy and clipping just a few short months ago. They both participated in the walk and gave a heart-felt report on the day’s events including the story of one survivor, Deb Hanmer, who is source of inspiration for many of us. It was wonderful to get a new participant’s perspective. READ ARTICLE>

Overall the event was successful in my eyes. We had a tremendous group of volunteers this year which made set up and tear down so much easier and even, dare I say, enjoyable! Thank you to everyone whose tireless efforts provide a beautiful, personal, and productive event. BRAVO!

 

11-Month Update

Published on by heiditeaLeave a comment

I realized I haven’t given much of an update on how my brain aneurysm is doing for many months. My 2nd aneurysm was clipped 11 months ago.

Physically, the hair has all grown back and didn’t ALL come back in gray, but certainly one streak snuck it’s way through. A few blonde highlights helped cover that up temporarily.

The incision where the skin was pulled back, then replaced and sown on with 53 stitches is almost non-existent. I say “almost” because there are still some dry, itchy spots directly along the incision cut that’ll flare up occasionally.

I do still have quite a good chunk of my scalp that doesn’t have much feeling and some nights it’s uncomfortable to lay on the left side of my face and head still. I haven’t been able to determine what triggers that uncomfortable feeling yet. But I certainly feel it and know that the brain bling, the bone plate and screws are there and making their presence known.

A good indentation has now become more pronounced where the piece of skull was removed the replaced, however. I can cover it up with my bangs for the most part, but I know it’s there and I’m a tad self-conscious about it. I don’t know why I feel that way….I should be proud of my battle scars and brain bling.

I believe I’m supposed to have a follow-up angiogram in January and I’m looking forward to finally seeing the images of the clip and it’s location. And hopefully everything will look good with the clip as well as the other, older, clip-filled aneurysm and they don’t locate any others.

I’m so ready to kick the year 2014 in the arse and kiss it goodbye.

IMG_1001.JPG

Still looks better than it did 11 months ago below

IMG_0852
Post-surgery. Yikes!

The day after craniotomy & brain aneurysm clipping

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!

Published on by heiditeaLeave a comment

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.

20141115-064916.jpg
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.