Losing my voice and my tribute to the Royal Hospital for Neuro-Disability (RHN)

Today, I will write about re-learning how to communicate. Looking back, it has been a long arduous journey to learn to communicate again. Probably my hardest test. For some reason, I don’t doubt I will walk again God willing, but I do doubt I will ever talk again with ease.

Before my accident, I would talk to anybody and anyone. I would be that annoying lady chatting to the cashier while you would be queuing behind me and thinking will this lady ever stop chatting. That was me. I was just very friendly by nature, something I took from my mum, who would talk to everybody, it never mattered what background they were from. When I came out of my comma, I could not talk. I was utterly confused. I could not talk. Imagine waking up one morning and you cannot talk or communicate. How can you communicate your feelings if you cannot talk? The longer your comma, the more damage your body takes. Because of the inactivity, the muscles weaken very rapidly. My problem was I got hit in the area of my brain controlling my speech. And after four months of being in a coma, the muscles used for talking had deteriorated to the extent I could not even eat, I was peg feed through my stomach. Even to eat, we use so many different mouth muscles, so I had to re-learn how to eat. When I got to the RHN, my husband gave me a buzzer, one buzz if I wanted to say yes and two buzzes for no. So I was limited to yes-no questions. My sister in Law even made me a yes /no chart that I would point at to communicate with staff and family. In the RHN I thought I would wake up one morning with the ability to talk. I would go to sleep hoping tomorrow would be the day I find my voice. That never happened. I did not expect to have to work so hard for my speech, something we take for granted. One day, my occupational therapist called Jane gave me a pencil, and asked me if I wanted to write. With tremendous difficulty, I scribbled some lines - my husband was just able to make out that I was writing my name! He then asked me if I would like a marker pen and this is what I wrote.

From left: You can just make out I wrote Hannah. Writing Yes. Trying to communicate with my mother and mother in law.

I wrote "Yes" - the first sign that my brain had not lost the faculty of language (praise God) which is usually on the left-hand side of the brain and in my case the side least impacted.

That was it, I was communicating by writing, the only issue was I had lost dexterity in my right hand, so my handwriting was terrible and my family had a mammoth task of trying to decipher my scribbles. When they were able to work out my writing, I would cry out of relief. To be understood was an overwhelming feeling because I agonised for over a month in trying to get my family to understand me.

Here my son is telling me he has end of year exams and I am trying to write to him that "I will make (dua) for you" - meaning I will pray for you. As you can see, I am overcome when he eventually gets it.

After a month of trying, I managed to tell my husband I loved him. It just happened to be on his birthday!

At the RHN, my second residency after St Georges hospital, I had a speech therapist called Alice who taught me how to eat again. I always remember I had to suck cola bottles through a muslin cloth to try and relearn how to chew. You know what I craved the most - a simple piece of toast. With the help of Alice and the amazing COMPASS team headed by Helen Patterson, the team in charge of technology at the RHN, we tried out lots of various communication aids. We tried something called eye gaze, where you focus your gaze on a letter and then it appears on the screen, I was terrible so that was a no-no. The problem which I still have, but not so severe is I struggle to see to things on my left, but now I have learned to compensate for this deficit. I can locate things to my left but I need a lot of time.

Trying to use eye-gaze with the amazing Helen Patterson of the Compass Team at the RHN

Following eye gaze I moved onto a big tablet, I was unimpressed but at least you could try and type your sentence out rather than the exertion of trying to write. Again with my left side neglect it was challenging.

But one day I thought this tablet will aid me in communicating with my kids. I remember the vowels were made of different colours to help me. With my kids in mind, I threw myself into getting used to communicating with the tablet. Praise God, I persevered and became proficient. I learned a great lesson - if I put my mind to something I can do it, it may take time but determination is an amazing thing - you try your hardest and then pray. The compass team thought I was ready for the next level. We tried an iPad, again I picked it up very quickly Praise Almighty.

The writing devices got smaller over time...May...July...October...

The iPad had an app called predictable, you type and the iPad speaks out your sentence. I never in my life believed a time would come when I would talk again. I no longer use my iPad to talk - I can talk, I don’t sound nice or like a normal human, but it’s better than typing. I have a condition called dysarthria. You can have different levels of dysarthria. I have moderate to serve dysarthria, this is caused by weakness in mouth muscles and a weak diaphragm which results in slurred speech and a very monotonous tone of voice. It's extremely difficult to project my voice, which you can imagine is challenging with four kids. I have learned to talk but I sound horrible.

Only people that I am very aquatinted with understand me, you have to tune in to my voice and I need to slow down to talk. I have come to terms with being disabled, but my voice? From a young age, I used to always talk to people and youth about Islam, as a young girl, I was inspired by Imam Siraj Wahaj. His manner of preaching was my inspiration, and I was always talking about Islam. Even the day of my accident I had planned to give a talk to my young students at an Islamic class I would deliver - my daughter was one of them. I was teaching them about the Prophet Mohammad's night journey and ascension. In Islam, we learn, ”To God, we belong and to Him, we shall return”. From this, we accept nothing is truly ours, everything we have is from God, whatever He takes back, we accept because it was not ours in the first place - just a gift from God. So I live with my condition and accept it. I would love to have my old voice back, I am from East London, so I had a hint of a cockney twang in my old voice, my husband used to tease me but now he would move heaven and earth to hear my old voice and my nagging.

I somehow have managed to read the Quran our holy book in Arabic, but I sound terrible.

The title of this post is Losing my voice and my tribute to RHN.

Such amazing, kind souls. I will never forget their love

They loved me at the RHN, the kindness was unbelievable. To be honest, I did not want to leave, but you can only reside there for six months. So in October 2018, I left the RHN for my next home -The Raphael Hospital in Tunbridge Wells. I met some lovely people there, but I was very far from my family. Signing out, for my next two blogs I will be shedding light on my physio journey and seeing my left leg revived and witnessing miracles.