Kate Wilcox

Peer Leader Stories

Kate - Thame Support Group Peer Leader

 
Suggested listening while you read: https://www.youtube.com/watch?v=vGJTaP6anOU&list=RDvGJTaP6anOU&start_radio=1

(read on to discover why!)

   

Kate lives in Thame, Oxfordshire with her husband of 37 years and their little dog, Alfie. She  and her husband are the peer leaders of the Say Aphasia support group in Thame. Kate was  diagnosed with aphasia following a stroke in 2023. I had the pleasure of speaking with her via  video call about her experiences with the condition and how Say Aphasia has helped. 

 

Kate before the stroke 

Kate might describe her life before the stroke as fairly ordinary. “I haven’t got a very  exciting life, really.” she says, “I always liked walking and cycling, and Steve and I have  been married for 37 years.” While her life will be relatable for many, and in that way could  be described as ‘normal’, she’s had a bigger impact on this world of ours in her 61 years  than she might realise. 

Kate enjoyed her studies and then went on to secretarial college and then worked as a secretary in her early  twenties, marrying Steve at 24. Over the next five years they had two sons and Kate  stopped working for a period to look after them. Once her sons were in secondary school  she went to work for the NHS; during Covid working remotely supporting a suicide investigation service before settling back into the secretarial job she loved at a GP surgery.  

Move forward to 2023: Kate and Steve were at a party with her work colleagues when she  started feeling dizzy. She remembers not feeling well and being offered a seat, but doesn’t  remember anything after that. Steve remembers thinking she seemed “spaced out”.  Thankfully, a doctor colleague recognised her symptoms as a stroke very quickly and the  ambulance was there in 20 minutes. And there it was—a total pivot point in their lives, followed by an incredibly tough 3-4 months in hospital and a recovery process that  continues to this day. 

 

The hospital experience 

Upon admission, CT scans revealed a haemorrhagic stroke (the less common of the two  stroke types). It was a big surprise as Kate didn’t have any of the risk factors: “I had low  blood pressure, and I don’t drink very much and I didn’t smoke, and I thought afterwards why has it happened to me?” She woke up in hospital and could not speak or remember  anything. This went on for four weeks before some of her memory started coming back. 

However she continued to be unable to communicate, which she describes as one of the  worst things: “I can’t explain how awful it was.” 

She also couldn’t walk for much of this time, but regaining the ability to walk was a  highlight of her time in hospital. To begin with she used a walker but she wasn’t content  with that and so, with the encouragement of the staff, she re-learnt to walk unaided— no  small feat considering that still to this day she can’tfeel the right side of her body. Thinking  about how hard it is to eat after anaesthetic at the dentist or walk with pins and needles  in your leg makes it easier to appreciate how much bravery it must have taken for her to  take those first unfeeling steps. The speech side of things was more problematic. Kate  recounts having to eat whatever she was given for months in hospital because she was  unable to communicate her preferences. She recounts this in a way that seems like she  doesn’t want to complain about something so small, but it demonstrates how an inability  to communicate has far more wide-reaching impacts than one might first imagine. Not  having the agency to choose how you fulfil the basic human need of eating is incredibly  demoralising.  

Kate’s face lit up as she talked about initially having lots of speech and language therapy  in hospital. She found singing to be a particularly joyous tool in the process as she could sing or hum the tune and not worry if the words came out as nonsense. Unfortunately she  was moved to a different hospital for the last twomonths,where she was told there would  be regular speech and language therapy sessions. In reality, she only had a few. Most of  the other patients had no speech, so there were few opportunities to talk outside of these  rare sessions and visiting hours. They wanted her to stay longer, but she was determined  to get out of there. She felt she’d have more opportunities to talk to people at home. 

The Early Supported Discharge (ESD) team worked with her for six weeks following her  return home. In Buckinghamshire NHS this team is typically not available to support  patients beyond six weeks, so while they referred her for further speech and language therapy, neurological therapy, and physiotherapy, all of these were subject to waiting lists  several months long. This was an especially low point for Kate: “It was very scary, suddenly  being left on your own. I didn’t really know what to do, especially with my speech... I got quite depressed with it all.” 

Listening to her reflect on this period of her life you can clearly hear the desperation in her  voice as she re-lives the feelings. They tried private speech and language therapy, but unfortunately Kate felt that the quality of the sessions wasn’t very good compared to what she’d experienced with the NHS. Finally, her referral came through and she began to work with  Chloe, a speech and language therapist who she feels blessed to have gotten to work with and can’t praise highly enough.

 

Everyday life today 

Kate finds it hard to find the right words and also has difficulties with numbers. When  talking about her two sons she draws the numbers in the air in front of her to try to help  her speak their ages. She knows the number in her head, but, frustratingly, what comes  out is often different. The fact that aphasia presents in this way can lead people  to think that sufferers have lost their intellect, but this is absolutely not the case. It would  be hard for Kate to mentally process and follow a new recipe, but she could easily prepare a roast dinner which she has cooked many times  before. 

Kate isn’t able to work anymore due to her speech and processing issues and the  accompanying fatigue. On the day Kate and I spoke, her calendar had to be clear for the  rest of the day to allow her the capacity to converse.Working is something she desperately  misses and losing that has stripped away a huge part of her identity and purpose in life; “I  loved my job... I had a reason to be... it sounds awful; I mean, I’ve got a lovely family, but I  felt that I was important... but now I feel like I’m not.” She racked her brains for any job  she might be able to do but came up blank. She joked warmly about a time she gave some  thought to working in a coffee shop before realising it would be a disaster and painted a  humorous picture of her dropping hot cups of coffee all over the place due to the numb  side of her body. 

Another way aphasia has stolen Kate’s sense of self is through the independence it’s taken  away. This is where our conversation became emotional. “I rely on Steve so much” she  says, before choking up and taking a moment to compose herself. “... and my children. I  rely on them so much. I’ve always been a ‘do it myself’ sort of job person and I get  frustrated because I can’t do things.” She cannot drive anymore, partly because she’s unable to process danger accurately—everything seems dangerous. Crossing the road  alone is another task most of us take for granted that is now futile for Kate. She struggled  to find the words to explain why it’s hard for her then, to illustrate what she could not  articulate, she held her hands over her ears and looked around in alarm. This turned out to  be a rather effective way of communicating how she can’t process the many noises, inputs, and factors that need to be taken into account to make a safe judgement call before  crossing. 

Steve and Kate spend a lot more time together since the stroke—“too much time” they  affectionately joke. He retired from his work as a driving instructor so he was able to give  Kate the support she needs. For the duration of our video call he sat quietly and patiently  just out of view, ready to assist when she has difficulty getting her words out. It’s clear Steve provides support in a myriad of ways, but they both struggle to think of examples; a  testament to how quick we humans can adapt to a new normal. Kate struggles to write longer pieces of text such as emails or letters, so Steve writes for her when needed. He also deals with any complex written information (like tax letters) as Kate typically can’t process more than a paragraph or two of text. He  also drives her wherever she needs to go. Kate grapples with mixed feelings; she is grateful  for Steve’s support while wishing she didn’t “feel beholden” to others. 

Kate also speaks fondly about her sons: “The boys are very good at playing games with  me.” Her face illuminates, recalling hysterical games of charades they had that brightened  up her days in hospital. In some ways, her relationship with her family has become stronger  as a result of the stroke, but there have been challenges as well. One of her sons was living  with them at the time of the stroke and experienced all the trauma and heightened  emotions at close quarters. While this experience would take a toll on anyone, because he  was struggling with anxiety she was conscious of the additional toll it might take. 

Kate also used to be an avid reader, particularly enjoying the escapism of psychological  thrillers, but she cannot read a book anymore. She has tried audiobooks but finds it very difficult and tiring to  follow along. Although she’s tried a number of strategies—like autobiographies (as she explains that a story that’s guaranteed to be in chronological order is simplest for her to follow) or  reading along at the same time as listening to the audio—she has not yet found a solution.  She watches films to get her escapism fix instead, although, she explains it’s not quite the same. She  proudly describes managing to follow a more complex film than usual on a recent cinema trip with her sister. 

 

The future 

Kate looks forward to continuing her role as a group peer leader for Say Aphasia. It gives  her a purpose in life that work no longer can. “It’s so important to me now... I love being  able to help people. It makes me realise that I’m not alone, and actually there are lots of  people that are much worse off than me, and I can feel a real empathy to help them.” 

Last week, Kate attended a new initiative called ‘Chilton Music Therapy’. It is held over  Zoom which makes it easier for Kate as she doesn’t have to leave her house. When the facilitator asked for song requests Kate put forth “Can’t Help Falling in Love” (originally by  Elvis Presley, but the beautiful cover by Haley Reinhart is linked at the start of this article).  This was the song she had hummed over and over again two years prior in hospital when  she was just starting to learn to speak again. Singing it again now in this new music therapy  group felt like a full circle moment. 

Recently, Chloe (the speech and language therapist that Kate adores) asked Kate to give a speech at a conference in front of 100 medical professionals. As she struggles to read, her life recently has been consumed with practicing her 10-minute-long speech. 

Kate also connects with people on stroke survivor Facebook groups and sees lots of  people struggling as she has. It's common for someone who has had a stroke to not be  made aware that the difficulties they are having with communication is a condition in its own right. She answers questions to help others, and sometimes recognises someone with  the same problem as her. She takes comfort in being able to help by telling them it has a  name and sending them helpful resources. Talking of the name “aphasia”, there’s irony in  the fact that the name of the condition is so hard to pronounce. “It would be nice if it was  an easier word,” Kate laughs at the end of our call, “but still, I certainly won’t forget it.”

 

– Written by Maddy Cordrey-Jones

 

 

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