One year ago this week, my life changed forever. March 16th began my “new story” of stroke, Moyamoya disease, double brain surgery and recovery.
Starting this week, I am running a blog series- mostly for personal therapy- revisiting the events of last year. I documented throughout the past year as my coping mechanism. While I shared many posts and feelings, I certainly left some emotions and thoughts on the paper for my eyes only. Some of my inner most feelings were too frightening and depressing to share.
Yet now that I am on the road to recovery, I think sharing my experience will assist others going through tough times. You don’t have to be facing life threatening disease and surgeries to experience a range of scary and emotional moments. Perhaps revisiting these times will help others…and I know it will help me to achieve full recovery!
So if you would like, feel free to follow this space to remember what the most terrifying…and joyful…moments of our life felt like.
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I picked up a tennis racket this week- exactly one year to the day when I played last. Boy did it feel great!
I never played tennis as a child. I loved and played many team sports- soccer, basketball, track and softball- but never tried the sport of tennis. I sometimes wish that I would have picked up on more individual sports that could have transitioned into an adult hobby.
In 2014, I realized that many of my friends were playing tennis. It seemed to be a fun exercise, game and social activity for woman my age. So I signed up with a couple friends at Fore Court and (literally) threw myself on the court. Playing tennis was fun, yet social but mostly it cured something in me that I didn’t know was missing- my competitive spirit.
Growing up, I played many sports but was never the MVP. However, I was always competitive. My hustle and positive attitude resulted in a decent athlete who could hold her own due to hard work. I forgot that this athletic spirit was missing…and loved how tennis brought that back. I moved up from lessons and to a league with a very talented partner. My friendships with my doubles partner and other players grew as did my skill. Playing in a league make me want to play better so I quickly found myself playing a couple times a week in an effort to increase my skill.
I signed up again to play in 2015. I fell in love with how tennis made me feel. Alive, frustrated, successful and strong.
Last March, when I suffered a stroke, I didn’t go back to tennis. My doctors wanted me to rest – my body and brain- until answers were found. Unfortunately, the answers were not ideal and resulted in a new diagnosis and a daunting treatment of brain surgeries. I went from playing twice a week to sitting on my couch….for a year.
My tennis friends soon joined my support system and were part of #teamlisa as I underwent my brain surgeries. The ladies even worked together to create a welcome home banner for me. So thoughtful.
Another fun fact: I stopped playing in March but the season went through June. My partner continued to play with subs while I was sick. Upon my return from surgeries, I learned that my double team “won” the league. I even received a trophy! So remember you can truly do anything while going through brain surgeries 😉
March 2016…I have known that my friends have been playing and even had a few invitations to join the league/drill/even play socially. I didn’t bite until this week. I am not in shape, heavier than I have been in many years and worried that it would hurt my body. I think my anxiety also prevented me from coming out of my bubble.
But, this week, I returned to playing and stepped onto the Court this Monday. I was nicely welcomed back from my old tennis friends and the Fore Court staff. My partner is a sweet friend who is a better player than me, but is playing simply to enjoy the game and have fun. Playing hard and winning is a perk but not the main goal. This is a perfect match for me as I return after not playing for one full year.
I had such a blast playing again! I almost turned my car around as I started worrying about all the things that could go wrong…but kept driving. I even checked with my husband moments before playing one last time to make sure it was the right decision. I decided to be brave as I hoped the risk was worth the reward. It so was!!
I stepped on the court and while rusty, my competitive spirit with myself quickly returned. I immediately started plotting how I can play more and be better. I also wanted to explain to my pro about my past year, but it just didn’t seem necessary. I guess I can officially say that I’m BBAACCKK!
Everything this year reminds me something about my brain surgeries. This is my new reality.
For instance, I’m currently on a plane taking off from TF Green airport and I am feeling excited for my trip. Yet deep down, I am panicked as it reminds me of taking off from Boston last year to go to California for my brain surgeries. I’m looking out at a beautiful sunny day (just like last May) as the plane lifts off and am breathing deeply to stay calm. This trip has no similarities to that terrifying one (except leaving the kids) but I can’t help but to reflect.
I was so petrified to go to California. I stayed positive but didn’t know if I was going to make it. I didn’t know if I would keep my speech or lose functionality of some part of my body. I would miss my kids terribly and worry about them the whole time. I’m tearing up and craving a Xanex even as I type this. Oh it was heart breaking.
Today, though, it’s a good trip. I am leaving to go to Washington, DC- my old home where I lived for fourteen years. I’m going early to see one of my best friends and her new baby. I’m catching up with my maid of honor and having a small reunion gathering of American University friends.
Most notably, I’m taking my scary new diagnosis of Moyamoya disease and double brain surgery survival story to a new place. I’m joining the other rare disease advocates to attend Rare Disease Week on Capitol Hill. I’ve been a heart disease and stroke advocate for years but this rare community is brand new to me.
I’m nervous to break out of my comfort zone and meet all new people…but excited to hopefully meet some patient peers with whom to compare notes and to make a difference. That always makes me feel good!
I’m also honored and thrilled to be able to bring Moyamoya awareness to Capitol Hill. The Moyamoya community is passionate, supportive and fierce- so being coincidentally being a representative for them is such an honor. I hope I do them justice!
It’s all a mental game for me. I am not off to surgery. I am heading to have fun and do something that is going to make me feel good- feel like I am contributing to a better world for patients and their families. I am leaving my children with my husband and parents which is fun for them. I am turning something challenging into something meaningful. ❤️
“Who me, a blogger?! No way. Who would want to hear what I have to say?”
Over the years, I have had this discussion- about blogging and/or writing a book- so many times with my husband. Who would ever care what I have to say.
As many of you know, I had my first stroke at age 21. One of my primary ways of coping through my four year of treatment and recovery was journaling. I found taking pen to paper was therapeutic and often enlightening. I was so sick at times that even walking was a challenge. I would find joy in simply walking four steps without falling. Yet my journaling was always available to me and a perfect escape from my real life fears and challenges.
Over the years, I have always wished to get back to that mindset of enjoying the simple things in life through slowing down and journaling. Unfortunately, real life tends to strip away the simplicity of sitting in a coffee house journaling. I became a mom with two kids who kept busy volunteering and spending time with family and friends. Along with reality, my perspective and calmness diminished.
Yet, both positively and negatively, I found that simple joy again this year as I confronted my new disease and two brain surgeries. Real life was scary but my journaling brought me peace. Not only did I use my journal (technically a laptop now) as therapy, I also started sharing some of my raw emotions on Facebook. As a National Spokeswomen for the American Heart Association last year, I initially created a community page, ISurvivorLisaDeck, to educate and create awareness about cardiovascular disease and stroke. Upon my new diagnosis of Moyamoya disease, this page quickly became used somewhat as a Caring Bridge site. It wasn’t my intention but it was the easiest and most efficient way to communicate with my family and friends who were worried about me. I used this page to share my messages and to gain confidence and support from my friends.
Now that I am working towards a full recovery, I have decided that a blog is needed. Sharing my real feelings through my experiences helped me tremendously but I’m not ready to stop. I have just realized that Facebook probably isn’t the place for over 300 word posts 😉 So accidentally, I have become a blogger….I’m just now making it official. I hope you’ll come on this ride with me!