IT’S NOT UNUSUAL FOR ME TO ASK QUESTIONS.
Curiosity has been my lifelong companion. As a
child, curiosity once earned me a set of World Book
Encyclopedias for questioning why woodpeckers peck
wood. As an adult, curiosity prompted foreign travels
across Europe, Africa, Asia, North America, South
America and the Caribbean.
So it’s no surprise that I was also curious in 2002,
after experiencing an ischemic stroke at age 45. I was
determined to understand why it occurred. I enrolled
in graduate school the same year and chose a research
focus on understanding stroke among young adults.
As a student, I was curious about why there were so few
publications about the American young-stroke experience.
I wondered why there was no advocacy voice for my new
identity. And I questioned the lack of social support and
recovery resources for young survivors and their families.
This inspired me to found YoungStroke Inc., a nonprofit
patient advocacy organization. YoungStroke now benefits
those like me, young adults who experienced their first
stroke before age 65.
Before my stroke, I ate a healthy diet. I often
competed in 5K races and had no family history to
suggest I was at risk. Yet, I had a stroke following an
outpatient surgical procedure.
The stroke affected my memory. After a week in
the hospital, I was sent home with a suspended driver’s
license pending further vision exams. For me, my
dependence on others during my recovery was a difficult
transition. During this time, I visited several support
groups. But I was depressed to observe I was too often
the youngest survivor in the room. Even more, their
conversations did not address my interests in career,
driving or relationships.
Because my memory loss includes the moment of
the stroke, I rely on the memory of my mother for the
events of that day. In short, I do not know how the
stroke felt. For the first few years, I was frightened every
time I had a headache or any part of my body responded
in an odd way. And, it has taken me years to relax.
My stroke altered the way I view myself. I was
shaken by the potential of a second stroke. The stroke
altered my family’s view of me, too. Since then, I
routinely receive daily phone checks from my mother or
brother … just to make sure I’m okay. Because I share
their concern, I have grown to appreciate their outreach.
For a time, I also felt my invisible disability to be minor
compared to those survivors with more obvious physical
disabilities. But I soon realized these situations offered an
opportunity for me to become the missing voice.
So, I began to build on my strength for public speaking.
I found my voice as an active volunteer for the
American Heart Association/American Stroke
Association (AHA/ASA). Over the years, I have
By Amy Edmunds, Survivor;
Founder and CEO, YoungStroke Inc.
Conway, South Carolina
of Young Survivors
Portrait of survivor Amy Edmunds courtesy of Paul A. Olsen