An 18-Year-Old with Aphasia: Sarah’s Story

[Through her YouTube channel, SymphUK] Sarah has inspired others to create their own websites and videos to show how language can recover after a brain injury. There is no plateau—even if you’re not the same, you can improve. There is always hope, which is a good thing, because without hope there’s nothing.

Joanie Scott

May 13, 2009 is a day we’ll never forget. It seemed just like any other day—my husband, John, caught the train to work in London, my 18-year-old daughter, Sarah, took the bus to school, and I drove to college where I was studying floristry with the ambition to start a small business after my daughter went off to uni in the autumn.

During my first session at college, I was looking through my portfolio with my tutor when one of the admin staff came into class. She asked for me by name, said something had happened at school, and my daughter had been taken to hospital. In my mind, I wondered if she’d had a fall, cut herself, maybe been hit by the school bus. I would never have guessed she’d had a stroke.

Sarah’s Experience
Sarah was reading aloud in an A-level English class. She even remembers the book—a Christopher Marlowe play. She felt sick and was aware that she could no longer speak. Strangely, she wasn’t scared. She was convinced that, although something odd was happening, she’d be fine later that day. Her shoe slipped off and she was unable to put it back on again. She was aware of everyone crowding around her. That’s the last thing she remembered for a few weeks.

At the Hospital
My tutor drove me to the hospital. The consultant was on leave that day, but when he learned that an 18-year-old with a suspected stroke was on her way in, he came in. Sarah was in a cubicle in A&E.

We were lucky it was a Wednesday morning—at that time, thrombolysis (clot-busting drugs) was only available in our hospital from 9-5, Monday-Friday. They didn’t believe it was a stroke at first. It could be a migraine, presenting with the same symptoms as a stroke. But the CT and MRI scans confirmed it. I was asked how much she weighed so they could work out the dosage. I got the impression that they believed the clot-busting drugs would be miraculous. They weren’t.

We began a very long life journey. Sarah couldn’t talk at all. Or swallow. She was nourished through her nose by tube. Her whole right side was paralyzed. As she lay in bed, I rubbed her arm to try to bring it back to life—just to do something useful. My husband; our other daughter, Coralie, who was three years older than Sarah; and I took turns to sit with Sarah around the clock. She was barely conscious, but when doctors did their rounds and asked her to sit up, she would try. When they asked her to touch her nose, she’d touch her leg. She gradually regained consciousness, although she slept most of the time. We were all in shock. She had a catheter inserted as she couldn’t walk to the toilet or use a bedpan. This was my 18-year-old daughter who had been to the gym and had her hair cut the day before her stroke. There were no signs that a stroke was about to happen—no headaches, nothing.

She managed to make a fist with her ‘bad’ hand and the feeling and movement began to return. She walked with a frame. We heard the word ‘aphasia’ from the speech and language therapist. Not being able to communicate was painful. Sarah’s eyes pleaded with me, asking me to answer for her. I wasn’t sure what she understood. She looked better, but could only say ‘yes’ and ‘no;’ often in the wrong order. When her best friend came in and imparted some gossip, we heard Sarah shout out, ‘Oh My God!’ A miracle, we thought! But this was spontaneous speech and not a sign that her speech had recovered. I marked out her name in dots, like you do with a pre-school child. She did her best to try writing.

That was almost five years ago.

Coming Home
After several months in the hospital and rehab, Sarah came home. It’s fair to say that the stroke changed everything and that having aphasia has impacted every area of her life. Some very good friends drifted away and others showed their true worth by being there. University was not an option, even with support. Facebook, using her mobile phone, going to noisy bars, and chatting with groups of teenagers were all things Sarah found impossible at first. Without the ability to communicate, people can feel isolated. Unfortunately, Sarah’s aphasia was severe—meaning that she could no longer read and write, understand concepts like colours, or process numbers if she heard them.

Nine months after her stroke, we recorded a YouTube video because she found it hard to believe she was progressing at all. At that time, writing the first letter of a word could help her to produce single words. Sarah couldn’t state her name or her age. We’ve done a series of videos since then and her progress is amazing. Speech has improved after hundreds of hours of face-to-face and online therapy. Reading and writing are much more difficult, but with the support of apps and an iPhone, Sarah manages to communicate. The video is used in universities around the world and our YouTube channel, SymphUK, has had a million visits. Sarah has inspired others to create their own websites and videos to show how language can recover after a brain injury. There is no plateau—even if you’re not the same, you can improve. There is always hope, which is a good thing, because without hope there’s nothing.

Moving Forward
Finding help to find employment is difficult for people with aphasia. I’m not sure she could have done it on her own, but Sarah found a part-time job in a local school. She passed her driving test and now drives an automatic car. Her disability means that driving in unfamiliar places would be a huge challenge, but driving locally offers a degree of independence.

Socialising is a problem. Finding a boyfriend is a problem, even though Sarah is witty, funny, intelligent, and beautiful. She decided to highlight this by appearing in a TV programme for Channel 4 called, ‘The Undateables.’ It helped to raise awareness of stroke and aphasia amongst younger people. Sarah is still single, but her confidence is slowly returning.

We founded a support group in our town for people with aphasia. It helps to meet other families who live with this disability every day. They understand, and few people really do understand how hard it is.