When you have a stroke, you must talk slowly to be understood, and I've discovered that when I talk slowly, people listen. They think I'm going to say something important - Kirk Douglas
image by: Ginny Kelling
The throbbing ache in my head was just a couple of days old when I decided to go for a run. I picked the Florida trail that wended its way through the trees along an abandoned railroad spur.
I was not the fastest runner, but I was a determined one, panting my way through, willing my legs to take me to the next mile marker. I was betting that grit would carry me all the way to a half-marathon. Not even a headache was going to stop me.
But inside the recesses of my brain, blood was congealing beneath the temporal bone at my left ear, a dam ready to burst, the viscous jelly blocking the blood flow and starving my brain of the oxygen that kept me alive and sentient.
As I ran, breathing to the rhythm of my footfalls, only a fraction of the oxygen I inhaled was actually making it to my brain. Cells were dying, and I had no idea.
I was in the best shape of my life
I had just returned from a trip home to Trinidad and Tobago, where my fiancé had proposed, his feet buried in the sand, his solid frame backlit by the setting Caribbean sun. I was in the best shape of my life.
And yet, less than week after my trail run, he and I were greeting the sunrise from the intensive care unit. Pain, tests, and unanswered questions had become our new intimacy. I struggled to lift my head off the pillow while a blood clot the size of a small egg had taken residence behind my left ear. What had caused it? How could it happen to me at just 29 years old? The answers that came would change my life.
One morning, there was a cramp in my neck. A few days later, I lost the ability to read.
I don’t remember much about the days leading up to my hospital stay, or the hospital itself, or even the next year. It exists in shards of memory, disjointed, cobbled together with the help of others. But what I do remember is the pain.
One morning, there was a cramp in my neck. By day two, it was a creeping parasite that worked its way up across my brow. By day three, the pain was vice-like. Standing up brought waves of blackness. It wasn’t until I lost the ability to read, when words became strangers to the wordsmith, that my fiancé realized something was truly wrong.
At my doctor’s office, we described my symptoms to the nurse practitioner: slightly slurred speech, the worst headache ever, dizziness, gaps in memory, words relegated to strange symbols — textbook symptoms of a stroke.
But when you’re 29 years young, a stroke isn’t at the tip of anyone’s tongue. Mostly, strokes happen to people 65 and older, though the American Health Association says 10 percent of strokes happen to people under 45. It’s why researchers at Wayne State University found that strokes in young adults are often misdiagnosed; instead, alcohol, ear infections, or vertigo get the blame.
It struck the nurse practitioner as odd that I couldn’t read. But she didn’t know what was wrong, and she sent me to a nearby emergency room. It probably saved my life.
My next memory: sitting in a small ER with my head in my hands, wailing. My next memory after that: a dark room. The nurse asked my name, if I knew where I was, what month it was. The pain clouded everything. Waiting for a verdict on the pictures of my brain and the nerve tissue around it.
A gray-haired doctor holding a scan, tapping a white oval, odd amid the flat gray of my brain in contrast. There was bleeding on the left side of my brain and a clot behind my ear, he said. A brain hemorrhage, he said. I didn’t know what that meant. And I don’t remember reacting then or when another doctor confirmed in the ICU that I’d had a stroke.
A nurse gave me morphine while we waited for an ambulance to take me to a larger hospital.
“You’re taking this so well,” the EMT in the ambulance said.
“What else can I do?” I asked, watching, fascinated, as I twirled my feet in circles beneath the blanket on the gurney.
Even after several days at the hospital, no one could tell me what had caused the stroke
I couldn’t get out of bed at the ICU of the big hospital. Compression stockings sheathed my legs, tightening and releasing every few minutes with a gentle hiss to keep blood flowing. The skin around the nodes on my chest began to blister. I couldn’t shower. I went to the bathroom in a bedpan with my fiancé cradling me. When I could finally take a supervised shower, he helped me into the stall and washed my body, grown creaky by inactivity.
But no one could tell me what exactly had caused the stroke. They said the clot would dissolve on its own. After eight days, they released me. I was exhausted, and I wasn’t ready to demand a diagnosis.
I did a lot of sleeping in the months after the stroke as my brain healed. When the scabs from the nodes flaked away, they left dark, quarter-size spots on my skin. At night, I opened my eyes in the darkness, afraid that the roving colored spots behind my eyelids meant it was happening all over again.
I thought about how fortunate I was to be on the uneven road to recovery. I hadn’t sought medical treatment within the first few hours of my symptoms, when seconds count, and yet here I was, a walking, talking miracle.
I couldn’t drive, exercise, or lift heavy objects. I didn’t have the energy to cook or grocery shop. When my fiancé went back to work, I was tasked with walking the dog. I felt fragile, scared that she would lunge and I would break into pieces, brown limbs coming apart.
Finally I got an answer: The culprit was my birth control shot
And I still didn’t know: What had caused the stroke?
Two years later, it seemed like little pieces of my life continued to fall away. I couldn’t hold on to the memory of recent things. I was forgetting words. I dreaded speaking up in meetings. I’d read to my new daughter, and somewhere between seeing the word and saying it, my brain would replace it with another word and I’d say the wrong thing out loud. She never noticed.
But it was enough to propel me into the office of another neurologist, desperate to know if the effects were worsening. Mostly, I was ready to know what had caused the stroke and if there was anything I could do to get better.
That neurologist put it down in black and white: Young female with venous infarcts in the setting of recent change in birth control. A stroke. Caused by my birth control shot. His finding would be seconded by another neurologist.
The estrogen in some birth control pills increases the chance that women taking them will develop a blood clot or venous thrombosis like the one that caused my stroke and hemorrhage, leading neurovascular surgeon Dr. Ricardo Hanel told me. It also ups the likelihood of a pulmonary embolism when a clot blocks the arteries in your lung, and dural sinus thrombosis when a clot blocks blood flow from the brain.
Even if birth control uses progestin instead — a synthetic version of progesterone that helps prepare the body for pregnancy — that doesn’t really change the risk of heart attack or stroke.
I’d never asked about the risks of taking hormonal birth control
I felt relief at finally knowing why I’d had a stroke. But also anger. I’d been on birth control in some form or another since my early 20s. I had been advised to put something foreign into my body, and it had almost killed me. And I hadn’t spoken up and asked about the effects or the risks.
The fine print on any medication is often a laundry list of risk. Depo-Provera is no different. Every few months, I’d go to the clinic for a shot to the arm. It was fast, easy, and relatively painless. At each visit, a high level of progestin was released into my body to stop me from producing progesterone and estrogen.
I was one of the 40.2 million women in the U.S. primarily using a hormonal method of nonpermanent birth control. Most of the 67 percent of women who practice contraception are using options with hormones, according to the Guttmacher Institute, using data from the Centers for Disease Control and Prevention.
The possible effects listed by the US Food and Drug Administration: weight gain, spotting and irregular or heavy menstrual periods, decreased sex drive, headaches, nervousness, possible higher risk of breast cancer in women younger than 35, and anemia.
And a large Danish study recently found that women who use birth control have higher rates of depression — although experts caution that the study doesn't make clear that birth control caused that increased risk.
Women die from stroke at a much higher rate than men, according to the American Health Association. And hormonal contraceptives nearly double women’s risk of stroke.
Most of the studies I’ve found associate hormonal birth control pills with increasing women’s risk for blood clots and a subsequent ischemic stroke like the one I had. It’s not a new idea; researchers made the link in 1962. Decades later, there are about 4.4 ischemic strokes for every 100,000 women of childbearing age, and birth control increases the risk to 8.5 strokes per 100,000 women. It seems like a small risk to not bring a child into the world before you’re ready — until it actually happens to you.
I believe in every woman’s right to choose what’s best for her body. But part of that choice should include asking questions, discussing our options with trusted health care professionals, and understanding the risks before deciding what kind of birth control we want — or if we want it at all. No woman should have to go through what I did.
Many of the friends I talked to after the stroke were floored that the birth control we were on could wreak such havoc. The risks seemed so minimal and unlikely. A couple of them reached out to say they’d made appointments with their gynecologists to talk about non-hormonal options.
More and more women are opting out of hormonal birth control and into what’s been called the greenest form of birth control — the IUD. A national health survey that looked at how women of childbearing age handled their birth control found that the use of condoms and the Pill went down between 2002 and 2013. Meanwhile, the number of women using IUDs more than quadrupled. More than 4 million women in the US use an IUD or a contraceptive implant. That’s almost 12 percent of women here. For many, the non-hormonal option is the way to go.
I refuse to live like there’s a time bomb inside me
For a long time after the stroke, I was still discovering who I had become. That I was a different person there was no doubt. At day one of your life, you have the most brain cells you will ever have. Somewhere around day 10,919, some of mine died. My brain had aged 10 years overnight. At least that’s how Dr. Hanel, director of the Baptist Neurological Institute for Baptist Health Jacksonville, described it to me. The cells that remained were frantically trying to make up for what had been lost.
This is my reality: Sometimes I forget words or what I’m saying in mid-conversation. Some memories are simply gone. Short-term memory is the worst. Sometimes I forget what cupboard the glasses are in. I get lost driving down a familiar street. I say the wrong words (I might say “window” instead of “door”).
But I function despite it. My speech is more deliberate. I have an intricate system of calendar reminders, to-do lists, copious notes, and lots of photos. I reread my once clean copy for strange words or misspellings. I practice presentations to death. Most people I interact with don’t even know this. But I do.
One in four Americans who’ve had a stroke will have another in their lifetime, the National Stroke Association says. But I refuse to live like there’s a time bomb inside me. I think and act with a deeper understanding of how short life could be. I speak often and loudly about the risks of birth control. I am who I am because of it. Ironically, I’m a mom because of it. I string my fingers between my husband’s and keep moving. He believed I was a warrior, and now so do I. But it is impossible for me not to look back and the nod to the face in the mirror. She is everything I have lost and become.
Source: Kari Cobham, I had a stroke when I was 29. My brain aged 10 years overnight, Vox, November 30, 2016.