A stroke, at 30 — a Sun-Times reporter’s personal story
BY MONIFA THOMAS Health Reporterfirstname.lastname@example.org December 25, 2012 7:36PM
Chicago Sun-Times reporter Monifa Thomas in the newsroom on Monday, November 19, 2012. I John H. White~Sun-Times
Updated: January 27, 2013 6:17AM
“I feel lost rimble now. I’ve in the hostel after hat a stroke.”
For seven years, I’ve been a professional writer, most recently a health and medicine reporter, translating complex issues into stories for the Chicago Sun-Times. But those nonsense words were all I could manage for a journal entry on July 12, 2011.
That was four days after I became one of those people I’d written about.
I was getting dressed for work when it hit.
Even after a full night’s sleep, I felt a wave of fatigue suddenly wash over me.
A couple of minutes later, my right arm and right leg went limp, and I collapsed.
I kept trying to get up and kept ending up on the floor.
Finally, the realization: I can’t move my right side. I’m paralyzed.
I’d been writing about health and medicine — a lifelong interest. But, right then, none of that helped. I couldn’t think, couldn’t fathom what was going on. I could only lie on the floor, helpless, unable to get to the phone to call 911.
I passed out, and my world disappeared.
My brain, scrambled
By the time consciousness returned, almost four hours had passed.
Co-workers who couldn’t reach me or get anyone at my building to go knock on my door had grown frantic and called a friend with a key who came and found me on the floor of my bedroom.
I tried again to move. But my brain and my muscles weren’t talking to each other.
My friend asked: Are you hurt?
From somewhere in the room, I heard a voice, soft and high, the voice of a shy, little girl. I realized the voice was coming from me.
That shy, little-girl voice told her over and over that, no, I was just tired. I needed to lie down.
Paramedics came and took me to Saint Joseph Hospital, not far from my apartment on the North Side.
At the hospital, someone asked for my Social Security number. I told him.
Friends were there now, too. I can still picture their worried faces.
Again, the hospital worker said: I need to know your Social Security number.
“Yeah,” I told him, “I know. I’m giving it to you.”
And, in my head, I was. But instead of numbers, all that came out of my mouth were letters.
I didn’t understand then what I do now: On July 8, 2011, a clot blocked the flow of blood to my brain, cutting the supply of oxygen, causing parts of the tissue there to die.
I was 30 years old, and I’d just had a stroke.
A face like melted wax
A stroke isn’t something you expect at 30 or even think about, unless you’re thinking about someone else — someone much older.
It took days for me to grasp what had happened, and what it meant.
In part, that’s because at first, mostly all I could do was sleep. My body had been traumatized.
I woke up only when a nurse came around to take blood or tell me I had to go for another test.
Whatever my parents and doctors were saying, it sounded mostly like gibberish to me.
It was three days after I had collapsed when I caught the first glimpse of my face in the mirror, and it finally sank in. I could see that my right eye was reacting more slowly than my left. The skin on the right side of my face was droopy, like melting wax. I tried to smile, but it came off as half-smile, half-frown.
I panicked. The doctors already had reassured my parents and me that I would survive and that I wouldn’t need surgery.
What they couldn’t predict was how much I’d ultimately recover, or how long that would take.
I had interviewed people over the years for stories about strokes, so I knew that a stroke rarely leaves its victims unscarred in some way.
My mind started racing.
Would I ever write another story? Would I ever be able to dance again, or even walk? Would I ever look like me again?
The anger bubbled up inside.
For some, the cause of a stroke is clear. High blood pressure, diabetes, compounded over the years, maybe with a family history of circulatory problems thrown in, lead to cardiovascular decay and plaque-narrowed arteries, then a heart attack or stroke.
But that wasn’t me.
I was young. And I had done the things you’re supposed to do to keep healthy.
I didn’t smoke. I exercised regularly. I danced salsa and practiced tae kwon do. I stayed away from bad foods, mostly. I literally ate an apple every day.
I had just had a physical in June, after turning 30, a couple of weeks before my stroke, and there was no sign of trouble.
Which led my doctors to a different likely culprit. They told me they thought birth-control pills probably were a factor.
Now, I was even angrier because I’m one of those people who actually reads the warning labels that come with any prescription drug, and I’d read that a stroke was a risk when you’re on a birth-control pill. But none of the other risk factors seemed to apply. So I thought it probably wouldn’t be a problem for me.
A hard road back
With each step in recovery after a stroke, doctors will tell you there are certain things you should expect. Not how well you’ll recover. They don’t say that. But things like: Nothing will come quickly or easily. You will be frustrated at times, maybe often. You will have to work for months just to have a chance to get back some of what you have lost. This is what they tell you.
I didn’t really get at first that the hard part still lay ahead — the five days a week for an entire year that would be devoted to my recovery. That would become my new life.
Even the most basic things were beyond me at first, physically and mentally.
At first, therapists asked me to close my eyes. They placed an everyday object, like a pin, in my hand. They asked what it was. My mind strained to place the object, its name and its use together.
My right leg was so weak that I needed help even to get off the toilet. I had to rebuild each muscle in my right leg and right arm. It was slow and grueling — but I didn’t have any choice if I wanted to eventually walk again and use both arms.
In therapy, I lay on my back, my therapist telling me to move my right leg up and down.
In my head, I told my leg to move, ordering it as hard as I could. At first, it barely budged.
Just getting my leg to lift up three times was enough to make me sweat. I needed to take a break.
Like a child, I had to relearn grammar and basic math. Speaking was an ordeal. Even simple words, like “food” or “stroke,” would escape me.
My recovery began at Saint Joseph and continued at the Rehabilitation Institute of Chicago, where usually I’d have my first therapy session at 8 a.m. I worked all day — with a break for lunch — until 5 or 6 p.m. I lived there for five months.
There was speech: 45-minute sessions of therapy in which the speech therapist would show me a picture, and I had to identify what it was — say, an octopus or a violin. I had to try to name as many animals’ or girls’ names as I could in 60 seconds. I’d listen to a story and then have to answer questions about it.
I’d also do arm and leg work: 45 minutes of walking, 45 minutes in the gym working on my leg muscles, 45 minutes on specific physical tasks such as how to get in and out of a car and how to put on my clothes, and 45 minutes playing Wii to use my arm or legs more.
I rarely did the same thing two days in a row, but I did everything multiple times.
I traveled at first in a wheelchair but practiced moving my legs, over and over and over. I graduated to a cane.
I had therapy sessions to make sure I wasn’t depressed, and I also did things like painting.
My family is from Atlanta, and, as I got better, we decided it would be easier for me to stay with them and continue my therapy at Emory University Hospital. I would go there three days a week as an outpatient.
At first, it would be two or three sessions of 45 minutes each for my arm, my leg and my speech and also a session in the pool to work my arms and legs.
Then, I got accepted into a more intensive aphasia class, every day for four hours: one hour of reading (where I started by reading short stories and answering questions about them); one hour with five others in the group to play games such as Taboo; one hour with one other person to do a crossword or some other task, and one hour with a therapist to work on my specific issues relearning and understanding language.
A life of recovery
I was lucky, at least, that, by my first session with the therapists, a week after my stroke, I was no longer hearing myself make perfect sense when I was actually speaking nonsense. The things that my parents, friends and doctors were saying again started making sense to me.
Because of aphasia — problems with language caused by my stroke — I had to set aside my usual reading habits. I couldn’t plow into 300-page books because, early on, I could read and comprehend only the simplest sentences. I started with three- or four-sentence “stories” about things like flowers and space and then had to answer questions about them. Each week, the stories got longer and more complicated. Nine months in, I picked up a copy of Elmore Leonard’s “Get Shorty” and realized I could actually follow everything I’d just read. It was the best I’d felt since I had the stroke.
Three months after being discharged from the hospital, I still couldn’t climb stairs. So when I returned home to Chicago for a week, getting upstairs and downstairs in my apartment meant a slow trek down the hall to the elevator.
Frustration, depression and sometimes embarrassment would creep up on me. The worst was when I went back to my parents’ house in Atlanta and still couldn’t get dressed or take a shower without help.
At times, the only thing that kept me going was all the support I had from my family and friends. They don’t say it but how could they not have noticed the difference in me, not just the ones on the outside? With my friends and family, I used to be the talkative one, the one ready with a joke or a funny observation.
Now, I need to think about what I say. By the time I get to the punch line, I feel like the joke’s not funny anymore.
I’d set goals, one after another: Lift my right arm and try to hold it up for three seconds, just three seconds, a lifetime. Then: Grab hold of a can with my right hand and place it on a shelf above my head.
These goals helped me stay calm and focused on getting back to my previous life and not giving in to depression.
Like my therapy, the frustration is ongoing. But it has shifted. At first, I was frustrated because it was so hard to do anything. Now, the frustration — which I still face every day — is that I worked so hard but am still not fully recovered.
I have faith I can get better. I don’t know how long it’s going to take.
I continue to set goals. My recovery continues. I am still doing speech therapy — usually at least one-hour sessions a week. My insurance stopped covering therapy for my arm in August, so I do that at home now, about three times a week for an hour. I still have trouble saying what I want to say. I am relearning how to drive.
I live alone. I am not scared about having another stroke, another terrible day where one side goes numb and I just want to sleep. I’m beyond happy about living by myself. For a year, I couldn’t do that.
I’ve gone back to work. I wrote this story, 16 months after my diary revealed how the stroke muddled my movements, my speech, my thoughts.
And thanks to my age and the excellent treatment I received, I am closer to being back to myself.
The doctors don’t say it this way, but I feel I’m at 90 percent.
Now, I take walks along the lakefront — without a wheelchair, or a cane — and think: I did it. I did it by myself.
And I’m grateful for that.