Some days I just want my old life back…

Some days I just want my old life back. I know that everything happens for a reason. And while I usually fully embrace this theory, it doesn’t mean that I don’t sometimes go kicking and screaming against it.

Emotionally, my bucket runs over. Even though my bravery, courage and strength were challenged by my health, today I have meaningful connections with others, I live my life filled with passion, and I am open to life’s many possibilities.

Physically, I am frustrated where I am. I had a Trans-Ischemic Attack (TIA) two nights ago. We were told that these can occur post- surgeries and they did. I suffered three within the month after my surgeries- and haven’t had one since. Out of the blue on Monday night, I had trouble reading the first sentence of Zack’s book. My face then went numb and then my left side felt heavy. I called Brian who helped me calm down. I think I started panicking which resulted in heart palpitations. I moved to my bed. He handed me a Xanax and I worked at calming down. The slight numbness remains still two days later.

We played the why game…was I dehydrated due to the temperature change? Did I do too much last week between DC advocacy and Girl Scout camping? Was it a blood pressure issue? Were my emotions running to high? Is something majorly wrong?

Post TIA, I feel like I have been hit by a bus. I have been exhausted so have been sleeping whenever I can. I feel dehydrated so I keep drinking water. And I have this headache that won’t fully subside. Even as I write this, it worries me…so I turn to my husband.

Fortunately, Brian is calm and reminds me that the surgeons said this could happen occasionally. I recall how many fellow Moyamoya patients suffer TIAs often (I read on our FB page) but I still didn’t expect myself to have them. I don’t know if it was positive thinking or naiveté but I planned to go TIA and stroke free forever. But that isn’t the case.

Today, I am frustrated. I just saw a photo from two years ago and I miss that Lisa. The Lisa that was physically in the best shape of my life, 25 pounds thinner than I am today. The Lisa that was regularly physically active without fear. The Lisa that had finally figured out a goal with ISurvivor and serving as a National Spokesperson. The Lisa who could parent easily and without worry that I’m scarring my children from my surgeries.

2014

I know it’s okay to wallow at times, and getting it out on paper helps me. So now I try to remember the positives of the 2015 Lisa. The 2015 Lisa didn’t know that her brain was at risk of a stroke. The Lisa who didn’t remember how therapeutic and healing it felt to journal and share her story. The Lisa that fell back into the busy rat race of life and forgot to appreciate the little things. The Lisa that didn’t remember how strong she was until she was forced to find out.

So I need to move forward. I can’t get old Lisa back but can work to gain the parts I want. I just hate that I’m physically scared to move forward with exercise, diet, etc. I want to get it back but can’t seem to get past that fear. Fortunately, I am an ever evolving project.

As always, thanks to those of you who read this and support me.

Two Decades

This past Sunday was a momentous anniversary for me- the 20th year anniversary of my first stroke. TWO DECADES!! It’s wild.

While it was heavy on my mind, I didn’t focus on my personal situation on Sunday since it was my son’s First Communion. I couldn’t think of a better celebration/distraction than his special day. And it was lovely- a beautiful day of faith, hope, grace and love. And in that way, as I look back, this dreaded day twenty years ago was also filled with faith, hope, grace and love.

My son on his First Communion Day

I still think about May 7, 1997 with a myriad of emotions… sadness, regret, unrealized dreams, and lost opportunities but also gratefulness, appreciation for life, deep emotional connections and continuous hope.

I have been mentally dwelling on this anniversary for the past few months. Mostly because I wanted to have a book written by this date…but that was just an arbitrary date set…and I am happy to report that I am working on a book, so hope it comes to fruition soon. (Add inspiring author onto my resume!)

I look back at that day the week before college graduation when I heard the words, “You’ve had a stroke.” I see my frazzled Mom arriving in my Washington, DC hospital room after an emergency rushed flight from Rhode Island. I remember all the friends who stopped by the hospital to bid me well even as they were on their way to our Booze Cruise Senior Week celebration, which I was supposed to be attending. I recall walking into the tan, sterile Emergency Room alone and noticing the sign listing the stroke symptoms- and realizing that I had all of them. I remember the friends who dropped me at the hospital and sat with me through the procedures and terrifying news. Mostly, I recall the fear of a stroke diagnosis, the throbbing pain of my headache and numbness of my left side, and the awful spinal tap (performed by a student doctor who had never done one before and missed my spine three times!) which diagnosed my stroke.

Lisa’s college graduation.

I also embarrassingly remember how naïve and optimistic I was about my life before that day and still struggle with that sense of loss. Until that point in my life, I had always worked hard to be an overachiever. I always gave it my all in sports, studied hard and received almost straight A’s in school and worked throughout school to be financially sound. I even worked really hard at having fun in college. I didn’t have a passion or purpose but know I was set up for success. I was ready to jump into the business world and give it my all. I literally had a start date ready at Andersen Consulting. I even had a tentative life plan…work a little while at Andersen Consulting (hopefully traveling to see the country) and then go get my MBA. I had California in my mind for that. I assumed I would get married one day and have a family. I never planned to be a stay-at-home Mom but I would be a good Mom. I just had this plan that I was ready to tackle life and have fun.

I didn’t even know it at the time but those dreams went out the window on May 7, 1997 with my stroke diagnosis. I mourn this loss- still to this day. I do a lot of wondering what could have been, should have been or might have been. However, I am older and wiser so I know that life happens while you’re busy planning. God had a different plan for me and despite kicking and screaming against it, I am living His wonderful, perfect plan.

Our family today.

I have learned that I am exactly where I am supposed to me. My life is just what it is supposed to be. I am married to an amazing husband and have two kids who literally make my heart burst (with joy most of the time…;) I don’t have a career but I have a fulfilling, passion filled life that I have created despite my limitations. My life of advocacy and volunteerism has more meaning than I could ever have dreamed of. I am here for my children; I help other survivors and patients; my story inspires others facing adversity; and I most importantly, I am here.

Twenty years ago I never would have believed you if you told me that I would go on to have four strokes, two brain surgeries, two rare disease diagnosis, chemo, menopause, trouble speaking, occupational therapy and many TIAs …but also a wonderful, loving family of my own, a safe nice home and fun beach house with my parents, a “job” where I get to speak to hundreds of people, a blog, a non-profit organization, life experiences through travel and the best friends and family I can ask for.

I don’t say this all to brag, but to remind myself that life is good. I mourn the loss I experienced twenty years ago yet appreciate the ride that life has given me. It hasn’t gone as planned but with acceptance and patience, I am living God’s will and cautiously celebrating twenty years of overcoming!

 

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.

May is #strokemonth

I had my first stroke at age 21 on May 7, 1997. I was sitting at Georgetown University Hospital’s Emergency room when I spotted a banner hung up on the wall. “May is Stroke Awareness month. Do you know the warning signs?”

As I looked at the symptoms listed, I was suffering from most of them. I had no idea that stroke could happen to anyone. I soon learned that stroke doesn’t discriminate. Since that moment, I have become a huge advocate for creating awareness of stroke symptoms.

stroke month
I suffered the same symptoms a year ago which brought me to Rhode Island Hospital. As you likely know, this began my Moyamoya journey. Through my diagnosis with a rare brain disease and bilateral brain bypass surgeries across the country, I accidentally provided much inspiration to many of you. This month, I plan to honor my goal to educate you about stroke and Moyamoya.  Please read this information provided by the American Stroke Association carefully!

THINK YOU ARE HAVING A STROKE? CALL 9-1-1 IMMEDIATELY!

F.A.S.T. is an easy way to remember the sudden signs of stroke. When you can spot the signs, you’ll know that you need to call 9-1-1 for help right away. F.A.S.T. is:

Face Drooping – Does one side of the face droop or is it numb? Ask the person to smile. Is the person’s smile uneven?

Face Drooping

Arm Weakness – Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?

Arm Weakness

Speech Difficulty – Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence, like “The sky is blue.” Is the sentence repeated correctly?

Speech difficulty

Time to call 9-1-1 – If someone shows any of these symptoms, even if the symptoms go away, call 9-1-1 and get the person to the hospital immediately. Check the time so you’ll know when the first symptoms appeared.

Time to call 911

This information is taken from the American Stroke Association’s Stroke Hero campaign.  Fortunately, I was asked to be a part of the stroke hero campaign….so stay tuned this week for more information.

Please learn these symptoms and take action quickly if you ever experience them! Learn more about stroke at www.strokeassociation.com.