Portrait: Anne-Mie

Anne-Mie’s story

On a Wednesday morning last October, everything changed. I was a healthy, 37 year-old woman living as an expat in France with my husband and three children ages 6-12. 

I was first diagnosed with migraine with aura in 2020. The episodes were recurring, but typical for auras - sequences of C-shaped lights in my visual field followed by light headaches. A neurologist suggested an MRI to still any worries I might have, but COVID-19 lockdowns and, frankly, a lack of worry on my part, meant I never got around to scheduling one.  

In August 2023 I had a bad case of the flu, which ended in a terrifying migraine that lasted six days. The auras were so intense that I couldn’t lie down at night because of the pain. I explained to my local doctor that it was like trying to give birth with my head at night and was told to come back in three days if the migraine medications didn’t help. I did get better over the next days, thinking this is what life with migraines is.  

Things took a bad turn 

Two months later, on a particular October morning, I was having breakfast and turned my head to look at my kids watching tv on the couch. I quickly realised my aura migraine had blinded the left half of my vision and I couldn’t see them. I began to say that I’m going to lay down for a bit, when everything suddenly went black, like an ash cloud rushing over my visual field from left to right, leaving me with pinhole vision in the bottom right corner. An alarm went off in my mind; l felt unfocused, but also a bizarre mix of terror and amusement, as if in a scary, but fascinating dream. 

I managed to think that I should call someone but could not think further than my husband or my mom. Understanding that they wouldn’t be able to come over anyway, since neither was in France at that moment, I decided that sleeping would be the best way to handle the situation. After fumbling to the bedroom (laughing as I tried to step into a closet instead of my bed), I called for my son to help me pick out my migraine medication and then went to sleep in a room where I did not know if it was light or dark. 

About an hour later I sat up and the blackness and “alarm” were gone, only the left sided blindness still there. I went about the day, exhausted, but convinced it was all a migraine. The following morning, I finally understood that something was very wrong when my vision hadn’t returned. At the doctor’s I was told this was no migraine and to go straight to the emergency department at the neurological hospital nearby. I was sent off to find transportation for myself, resulting in another confused struggle as I could barely see my phone or safely cross a street. 

After arriving at the hospital, I was admitted within minutes and not allowed to move or sit up. An MRI and a CT scan quickly revealed an active stroke, most likely caused by clotted blood from a tear in a carotid neck artery. My biggest concern in that moment was finding someone to pick up my kids from school and care for them while my husband scrambled to find plane tickets back home. Once that was taken care of, I could let the information sink in. 

The week I spent in bed in the ICU, I felt safe, calm and very well cared for. The care team was patient, friendly and accessible. I was treated with anticoagulants and the blind area shrank a little. When I closed my eyes at night, it showed wild kaleidoscopic images, leaving me hopeful the vision was returning. 

Going home to a new normal 

As going home approached, I asked about how I should live and what to expect. I was just told to live as normal; that the vision may well improve in the next three months and that I should not drive until I am cleared by a doctor. There were no leaflets on workshops or contact information to associations, just a reassurance that I can go on living as before. There was also no information on support for those early days, for me or my family. 

The first month back home I was exhausted, but in a positive mood. I was convinced that my vision would indeed return over the next three months, and I’d be able to go back to my old life and routines. I enjoy drawing and a month after the stroke, I made an illustration (pictured below) of how the stroke felt, which was helpful in processing what had happened. 

I’ve learned that I can’t live exactly as before. Six months later, I feel ok being alone. The fatigue is not constant, but still hits at times in a way that is overwhelming. In new, busy or bright environments, my visual deficit becomes more noticeable, which tires me and sometimes makes me very emotional. When I am tired, my language processing seems to slow down. We’re a multilingual household and it can take a moment for me to catch up to whether I am being spoken to in Swedish, English or French.  

I wish I could have met with a medical professional right away after the immediate emergency, to plan for rehabilitation/support/resources to seek. The focus of my neurologists and ophthalmologists has been on diagnosing and treating the stroke and torn artery, but how to deal with the fatigue and the vision loss and their implications - personal and professional - has been left mostly to me.  

Current struggles 

In March, more than four months after the stroke, I finally started vision therapy with an orthoptist, which has been very helpful. I have realised that my full vision may never return and I am learning to handle and accept that. I also see a therapist, who is a great support.  

The hardest part is accepting that I have gone from being an active and busy parent, to someone who doesn’t feel very useful. I feel guilty when my husband picks up all the slack, as I can’t run errands or drive the kids. On the upside, I’ve learned a lot about pacing myself. Before my brain injury I often took on everything at once, I rushed through things and often felt stressed. Now I set manageable goals for each day and make sure to have moments for rest. I can even feel like I achieve more than before. 

Advice 

My advice is to let yourself take little moments for the frustration and sadness, but then make sure to refocus on something you enjoy. Recovery is not linear. There are going to be setbacks and bad days, but we are still here; we are still moving forward - probably as more empathetic people, definitely more understanding of how hidden the full scope of brain injury can be.   

I’m still the same me, with poorer vision and less mental stamina, but perhaps a little better at listening to my own body and mind. 

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