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Amy Olfene, Maine

Amy Olfene shared her story at Maine’s Go Red for Women Luncheon on 3/7.  It was so compelling and important that I asked Amy if I could share it with you. 

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Amy has been a public health advocate, working side-by-side with the American Heart Association, for just about a decade now.  Just under a year ago, Amy had a stroke.  Here is her story. It is longer than our usual stories (because it was a speech) but I could not find much that I wanted to edit out. Take the 5 minutes to read Amy’s story. Then share it with the young, strong women in your life. –Becky Smith, Government Relations, Maine

My name is Amy. It is a name I shared with three other girls in my small class at Minot Consolidated School; four other members of the class of 2002 at St. Dom’s in Lewiston; and three other women in the hundred-person law office of Drummond Woodsum here in Portland.

It is a name that I’ve never had to repeat when contacting customer service or correct the pronunciation of when called at the doctor’s office. But on the morning of Thursday, May 26, 2016, at the age of 32 years old, I couldn’t remember how to spell it or what it even looked like.

On that morning, I had a stroke.

To understand what happened to me requires a reflection on the prior days. Wednesday morning, I woke feeling as if my head had exploded and did something I normally wouldn’t do: I called out of work. Assuming I had a migraine, I laid back down and tried to ‘sleep it off.’  Not once did I think it could be anything more than a headache. 

Leading up to my stroke, I had been under a considerable amount of stress. In addition to preparing for a move and starting a new relationship, I was taking on increasing responsibilities at work that, while amazing opportunities, pushed me outside my comfort zone and challenged me in ways that shook my sense of confidence. I was struggling to find balance and, honestly, I was feeling overwhelmed.

In short, tension headaches, migraines, and exhaustion were had become the norm. So, as I drove to work Thursday morning, drifting in and out of consciousness, my head throbbing, I told myself that I was just tired.  Upon parking, I looked down at my phone to see a text message from my boyfriend, Alex.  Despite staring at the screen for several minutes, I couldn’t read a word of it, asking myself, “Is he drunk? Did he ‘butt text’ me this mess?” Absolutely nothing made sense.

Now, when I tell this part of my story, I get a number of exasperated reactions, shaking heads.  People share a common disbelief that I didn’t realize there was something seriously wrong with me.

But, keep in mind, at this point, a clot that had formed in a vein in my head had been preventing blood from draining out of my brain for several hours and as much as two days, forming a hemorrhage in the portion of my responsible for processing language.  In other words, the part of my body that I had relied on 100% of the day, that I depended on for all my decision-making, was short circuiting and could no longer provide me with rational thoughts.

When I got into my office, I immediately shut the door and turned on the computer.  Reaching for my notepad, I realized I couldn’t read its contents, which were in my own handwriting. I tried to enter my email, but couldn’t remember my password.  I tried to say it aloud, believing the phonetics would remind me, but I couldn’t speak.  That’s when I found that I didn’t know how to spell my name.  I began to panic; I broke into a cold sweat and felt as if I might pass out. 

I told myself that I had let the stress get the best of me, and that I simply needed to ‘buck up’ and ‘get it together.’  I realize now that I purposely hid from my colleagues, because I didn’t want them to witness what I assumed was an anxiety attack. I felt weak and embarrassed, worried about how much longer it would last before I could get back to billable work.

It was only as I started to lose feeling in the right side of my body that I finally thought ‘you should probably go ask someone for help.’  I remember dragging myself down the long corridor and walking into my coworker Jerry Crouter’s office, unable to speak.  He put a legal pad in front of me with “Call the ambulance?” written on it, but all I could do was shrug my shoulders, because I couldn’t read it.  Moments later, EMTs were placing me in an ambulance.  When I tried to speak to one of them, the EMT merely responded, “I can’t understand anything you are saying,” before turning away.

Once at the ER, I had a seizure, and have few memories of what happened next.  I spent three nights in the hospital and left with limited knowledge of what had happened to me, or what to expect; it was incredibly frustrating. The confusion continued upon returning home, where Alex—a trained engineer raised by a physician—and I—a lawyer with a background in public health—read the post-discharge directions with as much understanding had they been written in Mandarin. 

And in the weeks that followed, I had a hard time focusing, especially on conversations, and—as someone who has been accused more than a few times of being a “talker”—was virtually silent come sundown when aphasia—a language disorder common in stroke victims, which affects our ability to communicate—would kick in.  Making a decision, grocery shopping, or cleaning the house took forever, because I frequently would forget mid-way what I was trying to do or where I was. 

Interactions that consisted of more than one individual, large group settings, or loud noises were often debilitating, and I witnessed the ambitious extrovert I had been for three decades quickly morph into an insecure introvert with an inability to recall names or words. I stopped hiking, my favorite activity, or running, because my depth perception and lack of balance made me uneasy on my feet.  And while I returned to work a week following my discharge from the hospital, it was on a part-time schedule for more than three months.  Adjusting to this truncated schedule was extremely challenging for me, but not for a lack of support from everyone at Drummond, who were nothing but caring and encouraging, stressing the importance of putting my health first and providing me with an environment that promoted recovery.

At home, we got through it with ample humor and a lot of patience. We would play Beyoncé’s “Formation,” the same song that got me through my first 5K a month earlier, to power me through the daily heparin injections; several of my friends stepped up to offer me rides and help me move when I couldn’t drive; I started a daily cognitive training program to improve my working memory and attention deficits; and I began utilizing my right-brain more, throwing myself back in photography and painting.

And I learned to accept, what all young stroke survivors must learn to accept, that pre-stroke normal and post-stroke normal are not, and will likely never be, the same. 

Now if you are sitting there telling yourself that I don’t look like what you pictured a stroke survivor would look like, you’re not alone.  In fact, a year ago, I would have agreed with you.  But 10% of strokes that occur in the U.S. each year strike adults under the age of 45, and strokes among young people—especially young women—have risen dramatically in the past 20 years.

We know far too little about stroke in young adults, especially how it affects survivors’ quality of life, their experiences with the healthcare system, and their need for supportive services as they resume their lives post-stroke.  We cannot treat the 30-year old professional the same way we treat the 80-year old nursing home resident, but that’s what we currently do. 

We need to learn to identify and address stroke risk factors in and with young people, including high blood pressure, tobacco use, obesity, and—as in my case—inherited clotting factors and use of estrogen-based birth control; we need to educate people, of all ages, about the signs and symptoms of a stroke. 

But that is going to take research; it is going to take exploration and innovation in science, medicine, and public health.  Just as I had to learn to adjust to life post-stroke, the medical community has a great deal to learn about working with young survivors, and funding is needed to providers and families get the training, education, and support to do just that.

Now, I’ve spent much of the past decade speaking from behind a podium, whether it be to conference rooms full of professional attendees, doe-eyed students, time-crunched lawmakers, or busy judges, but today the American Heart Association presented me with a different challenge: today, I was asked to speak publicly but about a very personal experience, something I have shared with very few.  In fact, today, the American Heart Association challenges us all by asking us to identify the “why” behind our presence here, our passion and support for the work that the Heart and Stroke Associations do to improve lives, prevent heart disease and stroke, and advance science, medicine, and policy. 

My “whys” are my friends, family, colleagues, clients, and all the healthy, strong, and determined women who walk around with no knowledge of their own risk factors, no understanding of the signs and symptoms of a stroke, or of the ways to prevent those risk factors from leading to a life-threatening event. 

Someone reminded me recently that, while we are our own best advocate, we do not have to be our only advocate. From my heart to yours, thank you for supporting the advocacy efforts of the American Heart Association and American Stroke Association.

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