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!

 

Today is World Moyamoya Day!

I first learned about the word Moyamoya just over a year ago after suffering my fourth stroke.

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Unfortunately, I learned that Moyamoya means “puff of smoke” in Japanese because the blood vessels in my brain looked like this during an angiogram.

After my diagnosis, I learned that there is no cure for Moyamoya disease but that the recommended treatment is surgery. Last June, I underwent two brain surgeries (a week apart) to augment the blood flow in my brain. Fortunately, despite some speech difficulty, pain and much anxiety, I had successful surgeries.

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I owe so much to my fellow Moyamoya warriors who supported me virtually (and in person) to get through my ordeal. Since my surgeries, I have become a vocal advocate for raising awareness of Moyamoya disease.

While not quite official, Moyamoya patients have started a movement to declare May 6th as World Moyamoya Day! I am proudly taking part in the day this year and asking all of you to take a minute to educate yourself.

May 6 day

According to the Stanford Moyamoya center, Moyamoya is a disease in which arteries in the base of the brain are constricted, restricting blood flow. Fragile blood vessels proliferate around the blocked artery in an attempt to bypass the blockage.

Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage (bleeding within the brain).

I consistently focused on this fact leading up to my decision to undergo surgeries. Despite it being a terribly difficult decision. I know I had to have surgeries!

Fortunately, I had the support of family and friends that allowed me to travel across the country for almost a month to have my surgeries with the most experienced, best adult neurosurgeon in the country.

Thank you again, #TeamLisa and Dr. Steinberg!

IMG_8206 Team Lisa

Knowing what was to come with a progressive disease, I was anxious to have the surgery and pleased that all went as expected. It was certainly a challenging, scary, anxiety-ridden, painful time but now just 11 months later, I am well.

Today, I join with other Moyamoya warriors to raise awareness and count our blessings. I’m so fortunate to have been connected to the most supportive group of patients I have ever met. Since there are so few of us in the United States (Less than one in 100,000), it was so comforting to have people to speak with before, during and after the surgeries.

Making the correct diagnosis seems like the most problematic part of Moyamoya Disease. If a patient suffers too many strokes, surgery may not be an option. Raising awareness of this disease and educating patients, EMS, hospital staff and doctors of this disease will ultimately lead to more correct diagnosis and better treatment. Help us help others!

To honor the day and create awareness of #Moyamoya, I ask you to change your profile photo on social media to this and hashtag #WorldMoyamoyaDay:

World Moyamoya Day

Today, I will spend some time reflecting on my good fortune to be on this side of surgery.  I am thankful that someone was able to diagnose me correctly with this disease. I am lucky my surgeries went well. I am fortunate to be feeling strong and finally emotionally stable. I am blessed to have a community of other Moyamoya warriors.

Pease join me in recognizing World Moyamoya Day!

Flashback…Feelings during the wait for a plan

This is what I am happy to share…some of my writing from last year that really gets to the heart of my situation. My journal, while my life line last year, is enlightening to look back on…

At this point last year, I was out of the hospital and having various appointments to follow up on my fourth stroke. I had reassuring appointments with two doctors but was still having the heaviness in my left arm and leg without an explanation. Those doctors reiterated that I was a complicated case and that it was possible that I would never find out what was causing my symptoms to show up again. I was laying low until my scheduled angiogram on April 7th that I hoped would show insight. Here’s what I was thinking at the time…

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“Why won’t my left side come back? I need it to “un-numb.” The frustrating fact of illness is that positive thinking can’t make it better. Working your hardest doesn’t guarantee anything. Isn’t that the kicker in life?? I think so! Generally speaking, hard work and perseverance pays off. That isn’t always the case with illness. I can’t stand that my left side is numb. It is also frustrating that it’s a total subjective feeling at this time. The docs certainly believe me especially given my pass but it’s not obvious…to them, to others and even to the basic medical tests.

I’m not like everyone else; this is a difficult and a tough lesson to learn. Not in the sense that I am comparing my accomplishments or looks or any of the things that women often do (but shouldn’t)…but in that my body isn’t the same as most people. I think I have gone so long feeling well and not having any issues that I started to forget that I’m unique.

I’ve only heard of a few other people in my life who have this feeling of left sided heaviness/numbness/ache. I think many stroke survivors have this feeling yet it’s amplified and renders their limb unusable. Some MS patients have this feeling intermittently.

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Then there’s me…CNS Vasculitis patient whose symptoms mirror Moyamoya disease. Still a rare disease and one that every single doctor I meet questions. Yet, I have gone 14 years without major symptoms. So, I started to think I was like everyone else. I dove back into life with a passion to do it all. After all, I seemed fine. I look like everyone else, I have a similar family to many, I enjoy doing the same things as my friends. BUT I AM DIFFERENT. My body reacts to stress, medications, exercise, food, etc. differently then others. My left side goes numb when I do too much.”

I was still resting at this time, so grateful for all the support of meals, cards, etc…and hugging my kids super tight since I didn’t know what the future would hold.  What a rollercoaster of emotions!

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Same feelings but not the same trip!

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.

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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.image

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!

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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. ❤️