When I was 28 years old, I had a massive stroke (a cerebral venous thrombosis in the sagittal sinus area) from a combination of birth control pills and a fairly common clotting disorder, Factor V Leiden. For more of this story, see Part 1 and Part 2.
Trying to Look Normal
One of my final tests in outpatient rehabilitation was to walk around town without falling down or getting lost. The day I passed that test was also the first day that I went somewhere in public by myself. It was a Subway and I stood in line, my heart pounding. I stared up at the menu to keep from looking around me, trying to ignore the sensation that everyone was staring at me. I was also desperately trying to remember how to order things, pay for things, and appear normal. In my head, I practiced ordering my sandwich over and over. I felt like if I made even a tiny mistake that everyone would be able to tell how broken I was, like they could somehow see the brain damage. I’ve never forgotten that feeling and for a long time I was afraid to tell people about the stroke, scared they would look at me differently. But really I was the one who looked at myself differently. I saw myself as broken. Like my body had failed me. And for a long time I didn’t trust my body.
Living With Fear
What no one tells you about life after something like a stroke is the ongoing fear. I’m going to be on blood thinners, which increase my risk for bleeding out, for the rest of my life. The first time I cut myself, I thought I might die. Panic overtook me and I started sobbing, a paper towel clutched to my finger, too afraid to look at the damage. When I finally peeked and found it was just a nick, I felt like an idiot. But I still avoid melons and gourds, instead buying my butternut squash pre-cut. Just in case.
The first time I had a cold, I thought my sinus headache might be another stroke. The first time I pulled a muscle, I thought I might have a DVT (deep vein thrombosis). The first time I had an asthma attack, I was scared I had a PE (pulmonary embolism). If I hit my head on something, which I’m prone to given how klutzy I am, I would wonder if I might suffer another stroke. After all, the doctors said that once having suffered a stroke, my risk for another was that much greater. At least 25-35% of stroke victims suffer a second. Recurrent strokes often have a higher rate of death and disability because parts of the brain already injured by the original stroke may not be as resilient.
Stressing About Stress- Oh, The Irony!
But those aren’t the only things that scare me. I also worry about stress. When I had the stroke, I was newly married and had moved away from my family for the first time so that my husband could attend graduate school. Before we moved, I had a challenging and exciting career, an identity, and a network of friends and colleagues in a large, diverse city. The small college town in the deep south felt like a foreign country—one where I was known only as “Josh’s wife.” When I had the stroke, I had no close friends and for the first time since I was 16 years old, I was unemployed and having no luck finding work. I was under more stress than I had ever been at that point in my life. Until now.
In the past six months, I’ve been going through a tremendously stressful period. I’ve been tested not by one of the major life stressors, but several at once. And I only recently realized that part of the overwhelming anxiety associated with these situations is the nagging fear that my body “fails” me when I am under so much stress. I’m terrified that I might have another stroke. Because now I actually know what having a stroke means. It means more fear, frustration, stress, self-doubt, identity crisis, feeling helpless, being helpless—and that’s only if you survive.
Getting Off the Blame Train
The on-going message from my doctors, armed with studies funded by the drug manufacturers, was that I was an anomaly. That what happened to me almost never happens. So I figured I must be weaker than other women. My body couldn’t handle birth control pills when millions of other women have no problem with them. At least that’s what the pharmaceutical companies want us to believe.
The consequence of that line of reasoning is that I blamed myself, something I didn’t even realize until I was in a yoga class last year.
When my teacher said, “Forgive yourself for something you think you did wrong,” I wondered what that might be. Then a voice came to me very clearly. “You blame yourself for your stroke,” it said. I sat with that sentence and turned it over in my head, looking at it from all directions. I did blame myself. And I had been blaming myself for nearly 10 years.
I thought writing my thesis had helped close the chapter on what happened to me. But somehow it only reinforced the narrative that I was weak and couldn’t trust my body. Really, I had been living in fear and babying myself for nearly a decade. After class, I made my way to my car, buckled my seatbelt, and cried all the way home.
The repercussions of having a stroke at 28 caused by hormonal birth control and a common clotting disorder still affect me today, in big decisions and little ones—from switching to a new blood thinner (so I no longer have to give myself shots) to wearing a helmet while biking around my neighborhood (since I can’t really afford another brain injury). I may have to live with the fear of having another stroke and the fear of bleeding out. I may have to get my blood checked every six months, wear a medic alert bracelet, use compression socks. But I don’t have to blame myself. The stroke was not my fault. I was failed by a greedy pharmaceutical industry, a society that values profit more than human life, and an overworked and under-informed medical community.
A New Story
I’ve learned that we are the product of the stories we tell ourselves and I have been telling myself the wrong story. I was not failed by my body. I was not weak because I had a stroke. The real story is that I am strong. Unbelievably strong. My body survived a stroke. For a month! My body survived being given medication that should have killed it. My body survived being sent home from the emergency room twice, massive seizures, clots, bleeding, and brain damage. My body recovered. And I am thriving. I am not weak. In fact, I’m stronger than ever and I’m ready to finish the work that I started back in graduate school. I’m ready to stand up and fight for the health and safety of women. And I’m not alone.
These first three articles are just the beginning of my research and exploration of the dangers of hormonal birth control, as well as other women’s health topics. I hope you’ll keep coming back to learn and share what I’ve found. Because despite what the pharmaceutical companies want us to believe, we ARE strong. And we are even stronger when we work together.
Real Risk Study: Birth Control and Blood Clots
Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.
I am a 44 yr old survivor. That’s the first time I have written the word survivor. Reading the stories made me realize that I am NOT a victim, a statistic but a survivor. I had a small stroke (if that’s possible) that affected only my vision. The MRI results indicate “a Cerebral Vascular Accident (CVA) causing a acute infarction of my right occipital lobe and equivocal tiny acute infarction of my left occipital lobe.” I have a homonymous hemianopia – basically the clot lodged itself in my occipital lobe and is preventing vision in my left vision field. I now realize that I was probably having TIA’s as well. I would get dizzy and need to hold onto something to steady myself prior to the day I woke up with the headache that changed my life. I was SO lucky as to how my stroke was diagnosed and lucky it was a small clot. I was on hormones to try to get pregnant through invitro fertilization (IVF). However I had been on birth control pills for 15 years prior – I stopped about 6 years ago and then was using other methods until we decided to try again. Silly me. Silly us. Stupid me. Stupid us. That’s what I thought. My husband feels like he caused the stroke because he wanted a child. He is going through just as much mentally as I am but its a different mental anguish – guilt versus whatever I am feeling. I haven’t figured it out yet. Some days its anger, others its depression, next its weakness. I wanted to curl up and never move so it wouldn’t happen again. Oh yeah, they also found a hole in my heart – a patent foramen ovule (PFO) – supposedly 30% of us have one of those. But no, they won’t fix it until my next “event” – so next time I have a stroke, they will fix the hole, but until then I feel like its Russian roulette with my body. But that’s another battle to be fought – which I am sure I will not win, the insurance company wins that one. They obviously would like to pay for rehab and care for me after my next stroke versus a surgery to help prevent it. Not cool at all.
Reading these posts makes me feel less alone yet still vulnerable. Every day is a mental game to forget or at least pretend to forget and move on. And I do good until I knock something over as I turn to my left because I didn’t see it or I run into someone or something when I am walking in public because I don’t see them and they think I do so they don’t adjust for my deficit. Ugh. Frustrating, challenging and draining.
I have a stronger faith then ever before – this could have killed me or left me permanently impaired in my speech, my mobility or other areas. There must be a reason He gave me this test, I just feel like I wasn’t quite ready when He handed it out.
I suffered multiple pulmonary embolism in 2004, when I was 23 years old. It was terrifying to be in the ER alone, and have someone ask if you have a living will. At that point in my life I didn’t even know what that was. I was just on my lunch break from work and going to have a test done at a hospital that my doctor ordered after diagnosing me with walking pneumonia. She was just being cautious, and I am SO glad she was. I was in the hospital for two weeks being poked over and over before they could finally dissolve the clots. Turns out the clots were from the birth control patch and my old habit of smoking. They said smoking was a risk for women over 40, not 23 year old healthy women. I had to be on blood thinners for months following this. I did not have the clotting factor that is often associated with PE, it was just the patch and smoking, so thankfully I do not have to be on the thinners the rest of my life. That said, sometimes I wish I was because every time I get a migraine (I get visual migraines) I think I am having a stroke, every time I get a slight pinch in my back (that’s what the clots felt like to me) I think I have another PE, every time I have pain in the legs the first thing that comes to my mind is blood clots. I have had two children and during my pregnancies and after my children were born I had to inject myself with blood thinners…..like my body wasn’t going through enough. I have had to schedule my deliveries so my blood wasn’t too thin and I didn’t bleed out, thus not allowing my body to deliver naturally. I ended up having to have c-sections and after my first a baseball sized clot formed behind my scar and they had to go in right away again……again I thought that was it. The reason I am writing my story is because I am inspired by yours and I am inspired that you are trying to make a difference and do something about it. Stay strong! XOXO
Wow, Michelle! I’m so sorry you’ve been through all of that. Thank you so much for sharing!