5 lessons learned; Reflections a Year After Brain Surgery

Today is a day of reflection. It marks the end of May (which was stroke awareness month) and leads into tomorrow which is the first anniversary of my first brain surgery!

I’ve looked back at the notes, messages and support from last year at this time and I’m just overwhelmed with emotion. I thought I would take a moment to review what I’ve learned during this past year. I hope my reflection serves as a Thank You to all of you who supported me AND reminds you to reflect on such lessons in your own life.

Strength

I have learned that I am braver than I thought. When faced with the tough decision of undergoing two brain surgeries, I made the decision firmly and with determination….and a little help from my friends and family. I was terrified but knew this is what I needed. Now, a year later, I see that it was the right decision.

Support

I don’t have the right words to adequately express how much and meaningful support I received this past year. My family, friends, community, old classmates, old teammates, my kids’ school, Brian’s work, American Heart Association colleagues…the list goes on and on.  I truly think that I had the biggest army of supporters ever 😉 I could write a book about ways to help somebody going through a tough time only because I experienced such amazing acts of kindness firsthand. Thank you #teamLisa. I will never forget what you did for me and my family.

Anxiety

I learned what anxiety feels like and how challenging it is to live with. Pre-surgery, I was fiercely optimistic but had many anxious thoughts and what ifs about dying. Post surgery, I was afraid to get back to life and didn’t have trust in my body. Losing my speech and suffering from TIAs were super scary. I felt nervous and anxious to do simple things like school pick up. I still have some anxious thoughts but I have come along way. I have gained a new understanding of people who suffer with anxiety on a regular basis and have become more empathetic.

New purpose

I have been a volunteer for the American Heart Association and the American Stroke Association for years but this past year has given me a new story to share with others.  In just the past few months, I have been positively rewarded with various opportunities to use my experience for good.  I served as a keynote speaker at the Go Red for Women luncheon in Boston and even filled in as a Passion Speaker at the Providence Go Red for Women luncheon. I flew to Atlanta to be part of the #StrokeHero campaign photo shoot and I was featured as the face of Alex and Ani’s Wings of Change stroke awareness bracelet.

I also became involved with a new cause, my new disease, Moyamoya disease. Never have I seen such a devoted group of patients,caregivers and doctors as I have found in the Moyamoya Facebook community. I was honored to represent this disease population when I attended Rare Disease Week in Washington DC.  I have lobbied at the State Level to increase awareness of Moyamoya Day and also hosted a small party for other local patients. Being able to take part in these activities and giveback has given me a new sense of purpose and a reminder of how amazing I feel when helping others.

Love

The most important lesson I have learned is recognizing what is important…which is love. I am blessed with tremendous, unwavering love from my family and friends.  I didn’t need to test that strength…but life-threatening illness will remind you how important you are to someone.  May each of you find such deep, thoughtful and compassionate love and friendship in your life like I have.

We had an amazing vacation thanks to Memories of Love!

To travel is to liveI love to travel. I love to visit other places and think I love it even more now after my surgeries. I always feel most alive seeing a new place!

Fortunately, I have had the opportunity to travel much in my life. However, my fun travel has been limited this past year due to my health.

Thankfully, we just came back from an amazingly special vacation! Ironically, it’s similar to the one we took last March, but this is so much more meaningful.

After our family vacation to Florida last March, I ended up in the hospital diagnosed with another stroke. (It had been 14 years since my last stroke.) I was then diagnosed with a rare brain disease, Moyamoya disease. There is no cure for Moyamoya but the recommended treatment is brain surgery. I had to leave my children to fly across the country with my husband to California in June for two brain surgeries a week apart. It was a trying time but I was able to get through it with faith, support, courage, amazing doctors and love.

We returned to California as a family in January for post-op testing and received the amazing news that my surgeries were successful.

Upon our return from testing, my husband and I discussed the possibility of a family vacation. Many of our friends were traveling out of the country which wasn’t an option for us. We weren’t sure what we could/would swing when an amazing opportunity basically fell into our lap.

A fellow Moyamoya patient on my Facebook support group posted about a family trip that she just took thanks to a nonprofit organization called Memories of Love. Their mission is to create joyful memories for children whose parents have a life-threatening illness.

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Created in loving memory of Marty Gottlieb, Memories of Love helps create lasting and loving memories by sending the entire family for five days to Orlando, Florida for a fun-filled vacation which include five nights/six days in a hotel and tickets to Universal Studios and Sea World. (www.memoriesoflove.org)

I was intrigued and soon spoke on the phone with the organization to learn a bit more. The staff was just delightful and so helpful. We were advised to fill out an application for a wish.

We knew our window of opportunity for escaping the New England winter was short and a bit limited due to other obligations. Yet, just two days after submitting the application electronically, we were sent a hotel confirmation for March and instructions for getting our amusement park tickets. This quick turnaround enabled us to make flights to secure our trip.

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We are so appreciative of this giving organization. It’s been a rocky year so we were overjoyed for this opportunity. Relaxing by the pool and experiencing the fun of the amusement parks created amazing memories for all of us. We were treated so well the entire time- I can’t sufficiently compliment his generous and loving organization! I probably took 300 photos but here are a few of the highlights.

Visiting Springfield, Home of the Simpsons, at Universal Studios
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Enjoying a Butter Beer at Harry Potter at Islands of Adventure
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Family smiles at Sea World
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The Shamu Show at Sea World
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Enjoying the pool at our beautiful hotel!
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Meeting Shamu at Sea World

A huge THANK YOU to Memories of Love for giving us this opportunity.

Again and again, I feel so blessed.

Taking care of myself is OVERRATED

I have been doing it for the past year. Taking it easy, going with the flow and just enjoying life. I must say that overall it has provided an awesome experience for me in regaining the “live for the moment” feeling. It’s also helped me lose a bit of my somewhat restrictive and controlling Type A personality. However, I am ready to get back to just live life without restrictions. They’re getting in my way 😉

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Starting last March, I was given many directives..

Rest and relax until you know more.

Let your body heal and see if the numbness goes away.

Rest and get your body ready for surgeries.

Let your body and yourself heal from the surgeries.

You can get back to some activity but you need to listen to your body.

Go back to living your life.

So I am able but I am struggling with the balance.

I’ve adjusted over the past few months to a slow but active daytime. While the kids are at school, I try to fit in some activities that are good for me physically and therapeutically as well as some that are fun and social.

I’ve stuck a nice balance but these nighttime plans are bumming me out. I seem to crash at night which is prohibitive to seeing my working friends. Again, I guess my lesson here is patience. But sometimes I just wish I didn’t have to keep learning it.

Monday was just one example of my daily internal struggle.  I played tennis  for about an hour and a half. I had a blast it tired me out.  I came home to take a nap…and hydrate…and lay on the couch.
Tennis

I was invited to a friend’s house to watch the Bachelor that night. I don’t even watch the show but wanted to hang with my girlfriends. I felt like I shouldn’t go and that I should listen to my body. My body was telling me to stay on the couch with a big glass of water and an early bed time. I really wanted to ignore my body and feel normal!

Bachelor

While I felt sad all day about having to stay in and rest, my husband came home and told me to go. He reminded me that I don’t have to stay all night…but I should go since I miss my friends. Considering that he is usually the cautious one, I knew that I should listen to him. He is wonderful and knows that I am working hard at taking care of myself…but also that my friends mean a lot. So off I went to watch the meaningful documentary  Bachelor, with a couple of my besties. The laughter, catching up and relaxing with them while watching junk television was just what I needed.

I need to practice patience and self-care but also need to find ways to nurture myself. Friends and an encouraging husband certainly help me do that!

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Flashback: Diagnosed with my fourth stroke at the Emergency Room

A year ago today, I was battling my left sided numbness…again. It started with my leg, then spread to my arm and eventually I could feel decreased sensation in my face. Brian and I discussed going to the doctor on day three but decided to wait one additional day…plus I couldn’t miss my daughter’s Cinderella play where she was performing as the Wicked Stepsister. She did a great job and we had a fun afternoon despite not feeling 100% and hitting my wall of tired/agitation at the end of the full day. I came home that night thinking that I had better go to sleep quickly since my left side was still numb.

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On the morning of March 16, 2015,  I woke up with my left side still numb and that gut feeling that I needed to do something. After all, as a National Spokeswoman, my primary health message to others is the importance of taking action when something doesn’t feel right. How could I not follow my own advice!?

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So, I threw some clothes on and knew I had to call the doctor. I knew that the doctor’s office didn’t open until 9am so I headed to Target after dropping the kids off at school. I wanted to do the few things I had planned so I could go to the hospital without a list hanging over my head. We needed milk and I wanted to get Lucky Charms for my kids for St. Patrick’s Day breakfast. As I walked around Target, I realized that I didn’t feel well- especially when I avoided talking to everyone I knew. My head was throbbing, my left side felt numb and I knew a trip to the doctor (at least) was inevitable.

On the way home, I left a message with my rheumatologist. I then called my local neurologist who informed me I should go to the Emergency Room.

“Can I just come in and see the doctor?”

“He’s not available today and you should go to the ER.” I was in disbelief.

So off I went with the promise of my Mom meeting me at the hospital. Brian was at work but waiting for me to call if needed.

Through my work with the American Heart Association, I knew that RI Hospital was a top rated comprehensive stroke center.  I knew that was where I needed to go.  It was a rough start parking at the very chaotic parking garage at the Rhode Island Hospital Emergency Room. It took me over twenty minutes to get a parking spot: I’m lucky quick action wasn’t needed.

RI Hospital

I was happy to have my Mom with me at the hospital. Still, I was panicked and flooded with memories of my past hospital visits in my early twenties. Plus, this time I knew I had a family. It wasn’t as much about me as it was about being sure the kids are okay. Thankfully, I was able to cover school pick up and activities with a simple text to my friends.

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The day was an emotional roller coaster. Initially, the doctors were surprised when I said that I had left sided numbness and worried about stroke. They took me a bit more seriously once I said I had already had three. They moved through the motions of an admission- taking vital signs, bloodwork, urine samples and many questions. After two hours, my rheumatologist finally called and forcefully ordered a Cat Scan and EKG. A bevy of doctors passed through my room and ended with the neurologist explaining that I was being admitted for a stroke.

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I tried to stay strong but my panic kicked in as my face immediately became flushed and I started to tear up. I can’t be going through this again. What if my disease is back? How do I stay calm and composed? Thankfully my Mom and brother comforted me with a hug.

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I then asked the doctor to clarify. “So, you think this could be a fourth stroke but will be doing more tests overnight to see if this might not be true?”  Yes, he confirms.

As the doctor leaves the room, I burst into tears thinking that CNSV is back and how I will have to start treatment again. What will the kids think? Will I be okay? Who will pick them up from school? What will they think when I am not home to tuck them into bed?

This is terrible.

Flashback: My life before everything happened…

I look back at the photos of my life last March and it seems like a lifetime ago. I was leading a very full and extremely busy lifestyle.

Happy familySure, I was probably doing too much (a lesson I’ve learned this past year) but I was loving life. I was serving as a National Go Red for Women Spokeswomen for the American Heart Association, serving as Vice President of the Parent Teacher Organization, leading a Girl Scout troop of 24 girls, playing tennis twice a week, doing my kids’ library twice a week, being a room parent, and driving my kids to/from multiple activities each day. I was busy but satisfied. A few key events that happened in early 2015 were our annual family vacation and an amazing heart month in February while serving as a National Spokeswomen.

Being selected as a National Go Red for Women Real Women in September 2014 was such a cool experience. I was asked to share my personal stroke story with a national audience along with eight other ladies (my heart sisters!) We were flown out to Los Angles for training and photo/video shoot. We were treated like the “talent” and didn’t feel like a bunch of survivors but rather old friends with something very special in common. I still giggle at my serious photo that was used nationally for awareness. So funny considering I smile most of the time.

Official Go Red photoFebruary was the busy month starting with a trip to New York City for the Go Red Fashion Show during NYC’s Fashion Week and culminating with the local GRFW luncheons. My heart sisters and I were also treated like celebrities during these events where we raised awareness and had a ton of fun. Some of the highlights are captured in the photos below.

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Our annual family vacation also took place in early March. I traveled with my husband, kids and my parents to Orlando. We laid by the pool, relaxed, went to Universal Studios where we rode every exhilarating ride, ate out tons and just had a blast together! You can see the pure joy in our family photos.

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Another highlight from last March was a friend’s 40th birthday party. Held locally, it was a fun mixture of some of my closest friends and some school acquaintances. The party was a great crowd with yummy appetizers, plenty of drinks and old school music. I may have even hit the dance floor 😉 It was a fun, carefree night that I often look back at as my last hurrah!

My last hurrah!

A blog without a plan

I will laugh at myself soon. I launched a blog without a plan. This is not what the professionals do. This is not even what I typically do.

Yep, I am Type A and like things organized and planned. However, I ignored all my conventional wisdom and just launched my blog page. I would never have done this a year ago.

Perhaps it’s because I was scared last year. Maybe it was because I used to think I had control (which I don’t!). It could be that I was trying to make everything perfect…now I am just doing it. There is freedom in this – and humor.

Blog

My husband asked me yesterday how often I would be posting. Not sure!

What is my theme? Unknown.

Have you drafted your first few posts? Nope.

But I have been dreaming of writing and sharing for years so I am just winging it. This would have panicked me in the past but now, as a 40-year-old, brain surgery survivor, I’m just writing when I feel like it. I predict a plan in a few months, but until then, I’ll just see what happens. This is bound to be an exhilarating yet terrifying journey!