When Donna K. Arnett, Ph.D., became the volunteer president of the American Heart Association in 2012, she was hailed as the first epidemiologist to serve in the role. What many people didn’t know is, she is also the first stroke survivor to lead the organization in its nearly 90-year history.
This week, Dr. Arnett, a noted researcher and chairperson of the Department of Epidemiology at the University of Alabama at Birmingham School of Public Health, shared her story publicly for the first time in an effort to raise awareness during American Stroke Month.
Dr. Arnett has never hid the fact she had a stroke at age 27. She simply never made it an issue, either – a testament to the fact that stroke is largely treatable and beatable.
Here is her story, in her words.
The day began like most others. I got out of bed at about 5:30 a.m. and went to let out my dog, Nikki.
Walking toward the door, I felt really odd. I then made some coffee and went to call Nikki back in. But the words that came out weren’t what I was trying to say.
“That was weird,” I thought. “Did I hear that right?”
Chalking it up to the early hour, I went on with my morning routine. Yet the odd feeling went on, as well.
I can’t quite explain it. Things were just fuzzy.
I knew something was wrong medically. I even wondered, “Is this what a stroke feels like?” It’s a strange situation for a healthcare professional. You know the warning signs, you have seen evolving stroke symptoms in patients, but when it is you, there’s an eerie disbelief – especially considering my age and overall good health.
With all of those thoughts going through my head, I drove in to my office. I was a clinical nurse at the time, and as I started my day the fuzzy feeling continued. Eventually, I turned to my boss and said, “I think I am having a stroke.”
He thought I was kidding. As the morning went on, he realized I wasn’t.
My symptoms piled up: Drooling; weakness in my left arm, then in my left leg; finally, my speech slurred so much that you couldn’t understand anything I said.
By the time I reached the emergency room, I could no longer speak.
I knew exactly, precisely, in great detail, everything that was going on around me.
Everything I’d studied and heard from stroke patients was playing out.
I felt no pain – only anguish. I was painfully alert, trapped inside a body that would not work and could not communicate. I formed thoughts and sentences but could do nothing with them.
My mind raced. I wondered what my life would be like in this new, isolated state. How would I care for patients? Could I even do the work that brought me such joy?
It was intensely lonely. I felt like no one could understand what was happening to me, and that no one ever would be able to really understand me again.
Three days before, I underwent a small, routine procedure. It went fine, but what I didn’t know was that I had a condition that left me prone to clotting after surgery.
Sure enough, clots had formed around the mitral valve in my heart. Over the course of my fateful morning, some of those clots broke off and traveled to the temporal lobe of my brain, creating many small lesions. I saw them on the MRI – white speckles that lit up my brain like brilliant stars lighting up the sky.
I was fortunate in so many ways – especially considering much of our current scientific knowledge about stroke was not available back then.
For example, I was not treated with tPA (Tissue Plasminogen Activator), the breakthrough drug that can limit long-term damage from stroke, because it wasn’t on the market yet.
Also, people weren’t as aware of the importance of calling 9-1-1 right away if you see someone showing signs of a stroke. Now we know that it's critical to act if you see someone you know – or even a stranger – showing signs of a stroke.
I found an expert who identified the cause for my clotting problem, and I have been safely taking the anti-clotting drug warfarin for more than 20 years.
I had no long-term paralysis. My speech returned. And, eventually, I relearned the things that were stored in the parts of my brain that were lost.
Losing a part of your brain is not like losing your memory. You retain the knowledge that you know how to do simple tasks – such as read a calendar, walk on a treadmill or weigh a patient on a balance beam scale – but the processes for doing those things have been wiped clean from your brain.
It was startling to discover these black holes. Relearning these things took time, patience, and the love and kindness of my family and patients.
The point is, I did.
I relearned all the little things and continued with the big things I had planned, personally and professionally.
And I’m here to tell everyone who is recovering from stroke or helping a loved one recover that there is hope.
You may be dealing with those same feelings of isolation, doubt and despair I was feeling. You may be fighting through the pain and fear of rehabilitation, or coming to grips with the understanding that some of your abilities may be different now.
But don’t give up.
You can get your life back after stroke. Not only that, you can go on to accomplish a great deal.
Donate today to help people with cardiovascular disease or stroke or become an advocate with You're The Cure. You can also get involved with one of our many causes, like Go Red For Women, Heart Walk or Power To End Stroke, take a CPR class or volunteer in your local community!