Raising awareness Your Stories Ayomide's story It has taken me some time to write this, partly because we are still in it (at the recovery end), partly because every-time I go to recall August 2018 I realise I am still a long way from getting over it and putting it in my rear mirror – it’s all still very raw (writes mum Aramide). I also wanted Ayomide to be comfortable with how honest I was being. My daughter’s name is Ayomide (pronounced Are-your-me-day) - it means “my-joy-has-come.” Ayomide is 17 years old and until 13 August 2018, was a regular teenager, going to college, working part time in McDonalds. She worried about makeup, about boys, about best friends, driving lessons and her 18th birthday plans. She finished in the top 2% for her English GCSEs in 2017, she wanted to attend a Russell Group University and would earn her fortune as a writer but would go into journalism (to pay the bills). Since birth, she had never had cause to visit the hospital. She did not smoke or drink (not even in secret!). When Ayomide complained of a headache on the evening of 13 August 2018, I was mildly irritated. Ayomide When Ayomide got into a heated argument with her younger sister about switching off the lights before bedtime, because ‘it was too bright’ I sighed, closed my room door and stayed out of it. I vowed to buy a house, so each girl did not need to share a bedroom by the end of 2019. I got a call on 14 August 2018 at work to come to St George’s Hospital as Ayomide had a seizure at work. She was a bit dazed and sitting up when I arrived. I was updated that she had been tested for pregnancy twice her bloods had come back clear, and she was advised to eat and drink plenty of fluids. The doctor on the day suggested that the first aider at McDonald’s was incorrect because three mins for a first seizure was highly unlikely even though he was not present. We were discharged a few hours later, we took the train home from Tooting. For the next 2 days we were turned away by our GP and noted that the paramedics who attended to Ayomide on the Friday of that week rolled her eyes when we explained that her facial twitches and loss of speech where getting more frequent. Ayomide had told me that this had been happening all week. I called an ambulance when I noticed that one side of her face drop for about 3 seconds. St Thomas Hospital doctors suggested it was nothing but boyfriend trouble and stress (a common misconception – in my mind because she is black and comes from a single parent home). She was tested again for pregnancy and we were sent home, because “it was nothing and would go away by itself” We took the bus home. Ayomide’s first grand mal seizure happened on 18 August 2018. Beforehand, she bathed as usual. She was quiet but hungry. She complained 10 minutes before of losing her speech. We had accepted the doctor’s diagnosis to try to alleviate her stress level. Her mouth foamed, her head rolled back, and she made jerking movements to the floor. I screamed for my other daughter to get help and dial 999. She directed them to our home - she was 12 years old. We took the scenic route to the hospital, no sirens.... On arrival, a CT scan was ordered immediately, blood tests (all came back clear). The junior doctor came back to tell us this information and proposed (even though Ayomide was unconscious, unable to walk and wailing) that she be discharged and “return in 2 weeks to the fit clinic”. I challenged and questioned every word from this point forward until Ayomide was discharged 117 days later from St Thomas Hospital. This is what happened in 117 days We were sent home prematurely on 31 August and Ayomide had another seizure on 1 September 2018 (I remember her screaming when returning to consciousness to make the pain stop) I refused to leave Ayomide’s side, except to go home and shower and ensure my younger daughter was in school. This stopped at about day 80. I stayed in the hospital grounds for 36 hours because an RMN did not show up for her shift. I related every change, every word and every movement by Ayomide to her medical team. I thank Doctor Hopper for hearing me when I explained that her legs seemed to vibrate sporadically whilst she drifted in and out of consciousness. I heard him when he said to his colleague ‘this girl is having mini seizures’. We thought for a time, she was epileptic. I watched Ayomide have her first lumbar puncture (and her last before discharge at the end of November 2018). I heard the word encephalitis for the first time in my life shortly after this first lumbar puncture. I ignored all advice to wear a mask and apron when it was first suspected that Ayomide had meningitis and she was moved to an isolated room. I watched Ayomide deteriorate mentally due to her brain inflammation. I watched her nearly die with blood seeping from her mouth, screaming to my brother to bring Ayomide’s sister to come say goodbye on 22 August 2018 (Another gran malle seizure). I watched Ayomide be sectioned and stubbornly challenged the section via a tribunal. I listened when a lawyer advised me on the phone to ‘reign it in, as passion can be misinterpreted as aggression’. I noted the appointed social worker acknowledge the stigma attached to Ayomide having a section on her record and say casually: ‘unfortunately discrimination shouldn’t happen, but it does.’ She offered no alternative to fix this. I watched her CAMs senior consultants body language change when I explained that ‘Ayomide would have it hard enough as a black woman, in the workforce without also attaching a mental health stigma to her future.” I watched Ayomide pull out several cannulas whilst we waited our turn for the theatre room. I cried when medicine that would calm her was given two hours late and her report read that Ayomide was aggressive. I watched a doctor cover her pregnant stomach when I was hysterical at being told that Ayomide had been treated for the wrong type of encephalitis for four weeks and they would have to switch medication. I said my daughter is not an experiment a number of times. I prayed hard for the minutes and hours to move when second line Rituximab was finally administered because the plasma exchange had not worked. I watch Ayomide remember she spoke French, and ‘multiple languages including Chinese (because of a K-popband called DNA). I listened to her sister sobbing, having been nerves of steel for so long. I slept on the floor in the living room when she complained that she did not want to sleep in her shared room without her sister or in my room. I slept on the hospital floor and refused to go home so many times. I thanked Nurse Chris for bringing me a foam mattress, even though six weeks earlier he said “I was confrontational” for insisting Ayomide needed fresh air and all doors must be kept open and I asked if that included the bathroom. I bathed Ayomide every morning because I did not want strangers (Registered Mental Health nurses - RMNs) seeing my baby girl naked. I listened to the updates each morning of how she smashed two phones, pulled alarms due to the side effects of steroids and wondered where the RMNs were whilst this happened. I fought (hard) for walks in the hospital grounds when Ayomide was placed under a section 2 and then a Section 3 of the Mental Health Act. I tried to understand how St Thomas policy meant Ayomide was considered an adult in some cases, and a minor in others. I fought perceptions and judgements from fellow Africans who asked me to pray and fast at 12 midnight (because that was when evil comes out - and I must have offended someone was why this was happening to us). I educated ignorant people that my daughter wasn’t crazy but had symptoms of mental illness because her front temporal lobe was inflamed. I listened to insensitive RMNs describe in great details with hand motions exactly what my daughter had done the night before. I hugged brilliant nurses and told my story to strangers, cab drivers and fellow patients. I relied on the kindness of strangers. I set up WhatsApp groups, closed them and made broadcasts to friends, families and cab drivers to come and help. I reached out to old friends, made new friends, made enemies’ friends and friends’ enemies. I stood over Westminster Bridge several times and contemplated jumping but remembered I couldn’t swim and was angry because if I wasn’t alive, Ayomide would be locked away in Maudsley Hospital with no one to advocate for her, with no one to look after her younger sister (she would always be scarred). I spoke to the Samaritans…a lot. I stopped being so hard on myself and learnt to ask for help. I was a regular visitors to the PALs office, learnt what a Mental Health Advisor does (ours abandoned us on the day of the tribunal) and spent all her time trying to convince me that the Maudsley hospital wasn’t that bad, ditto Ayomide’s appointed lawyer who was late and missed all appointments with me). I researched how these types of tribunals worked. I made Google my best friend. I broke down when Ayomide’s bed was taken away for her safety and I watched strangers sit on seats whilst she slept on a mattress on the floor and ate with a tray in her lap like a prisoner. I struggled in with a television, when one hadn’t been provided from when Ayomide was in the ward, till she got worse and they refused to provide one for her own health and safety. I walked out when Ayomide wet herself intentionally I thank God for the Wi-Fi in St Thomas I had a panic attack and couldn’t stop shaking when one RMN, who clearly didn’t want to be there said when Ayomide ran a few paces on our daily walks (but stopped when she didn’t know where she was going): “that’s it, no more walkies”. I danced (when Ayomide wanted to) to Chris Brown over and over. I thanked my workplace at MBNL and line manager for being so very understanding. I explained the significance of the song Kids by One Republic and how it linked to our favourite holiday destination in San Sebastian to everyone who came to look after my daughter at St Thomas. I promised to take Ayomide back to San Sebastian, but only if she got better. I whispered over and over and begged Ayomide to not leave me. I questioned how it was possible for three RMNs to be present and watch Ayomide rip up her favourite books ‘Purple Hibiscus’ and ‘Americannah’. I explained over and over, that the abusive father in Purple Hibiscus did not relate to her. We ignored great views of Westminster and Big Ben. I thanked Jon on the Encephalitis Society hotline for telling me about Anti-NMDAR encephalitis and suggesting your daughter fits the profile. I researched about autoimmune encephalitis a lot. I learnt to hold my tongue and ask intelligent questions about the side effects of Steroids, Olanzapine, Lacosamide, Prometosine, Keppra, Risperidone and Clonazepam. I learnt to write everything down and ask questions without fear. I questioned God and his “plan” regularly. I did not believe when an RMN said she slapped one of the nurses. (Ayomide remembers a great deal and explained that this was her reaction to being pinched by this woman). I watched the number of RMNs increase from 1 to 3 and then back down to two when she got better. Each morning started with ‘Hi, I am the mum. Give us the room, please. This was my kid and I had complete control of her’. I took the advice of my priest and wrote to my MP Neil Coyle and all the councillors in Southwark to apply some or any pressure. I tweeted the Home Secretary a lot - he never responded. I thank Neil Coyle and Harriet Harman for making the time to respond to me. I thanked headmistresses and went in search of primary scho6ol teachers and best friends and college, anything to help her come back to her senses. I researched Neuro Rehabilitation units and second opinion doctors. I listened when Jon on the Encephalitis Society hotline recommended Dr Mike Dilley for a second opinion. I was grateful when Dr Dilley came all the way from Tooting to Westminster to meet Ayomide. I loved that he sat on the floor with Ayomide, took one look and said: ‘she will not get better here’ and suggested the Lishman unit, at the Bedlham Hospital for her recovery and told me what a nuero physcologist does. We ended up elsewhere due to Ayomide’s age but, were it not for him, I would not have known there was an alternative to Maudsley and that Ayomide had an ABI (Acquired Brain Injury). I thank Dr Paul Holmes and his team for being on our side. I thank all the nurses and doctors that empathised, cried with me, laughed with us, danced with us, sat with us, held and squeezed my hands. I thank nurse “yum-yum” (Carole Ngozi) for seeing the vulnerable bits I missed. It has been a horrendous journey, but we are for the home stretch. Ayomide’s medication has been reduced significantly. Her clinical markers have come back clear, and her brain inflammation has gone down. She comes home from the unit from Fridays to Sundays. She is on her journey back home. I love that Ayomide embraces her curves (a side effect of the clonazepam) and refers to herself as Thicke (a colloquial term for a curvaceous woman) and pronounces it ‘Thickay.’ I made lifelong friends and I got rid of friend debris. I went into myself and then came back out again. I learnt how resilient people are in a crisis. I evidenced how strong I could be. I held hands with both my kids on New Year’s Eve and I no longer sweat the really small stuff. I went for my first drive (alone) last Saturday and left Ayomide for the first time by herself for one hour since August 18, 2018. I sobbed beforehand, she hugged me and let me know: ‘Mum – chill, it’s going to be okay’. I took advice from one friend that she is trying to be normal and herself and I must trust this. We look forward in hope of Ayomide finishing her A-levels and picking a place at the University of her choice. I love both my daughters intensely. I fell in love with them all over again with everything that has happened to us as a family. Ayomide’s (and my younger daughter’s) resilience and bravery is all I live for. Both girls have been through so much and are all the stronger for it. Every day, I ask both of my daughters if they have headaches, look them in the eyes all the time, stop work at 6pm, tell them I love them and ask, again and again if they are okay. It’s a good sign they get irritated and annoyed….