Hello, my name is Moyra Bernadette Lee and I am dying. Yes, I know we will all die some day but for me that day is close. I lie here in this room, in this bed and wonder when that will be. Hours, days, weeks, months, but not years.
I suffer from a rare neurological disease called Progressive Supranuclear Palsy (PSP).
I was diagnosed as a PSP sufferer in 2010, but I had symptoms before that. No one seemed to know what was wrong with me. I kept falling over backwards, my eyes were ‘funny’ but I couldn’t explain why or how, and I struggled to keep pace with chatter and banter in the pub or at a dinner table when we went out with friends. I think some people probably thought I had a drink problem!
I can’t really see much now, just a fading light. I can’t speak, I can’t eat or drink any more. I can only move my leg slightly when Ethan, my grandson says: ‘Nana, show me your dancing legs’. But that’s it.
I have a catheter and I’m fed into my tummy through a tube three times a day. I will never leave this bed again. But I can still see the funny side of myself. Yes life can be unfair but I have had a good one.
People wander into my room and sometimes talk about me. I want to shout out “Hey! I can hear you, I am still here!”
And God, (where are you by the way God?)... What I would give for a tea cake with jam and a cup of tea. People need to understand that I can think and understand most things, even if I do feel anxious and confused from time to time.
Through the swinging 60s and the 70s I worked as a secretary, as they called it in those days, at Michell Bearings, on the banks of the River Tyne in the North East of England. I later went on to work at the Royal Victoria Infirmary in Newcastle for many years.
My husband Bobby and I now live in Tynemouth, next door to my only daughter, Karen, her husband Maurice and their beautiful son Ethan, who’s 7.
I am lying here in my specially made bed. It moves of its own volition occasionally, to stop me from falling out, getting uncomfortable or getting bed sores. A very clever thing it is. I can hear seagulls, my grandson chattering in the back yard, the clatter of some scaffolding poles outside, and Bobby pottering on and whistling in the kitchen close by.
I was told that only 4,000 people at any one time suffer from PSP in the UK. Because of its relative rarity it doesn’t attract much investment or financial support, but my daughter and her husband Maurice run a thing called Moyra’s Green Day charity event every year around St Patrick’s Day.
So here I am, Wimbledon final on the radio. At least my ears still work. In walks Karen, my daughter. By the way, everyone’s first question is naturally, always: ‘Hello Mam / Moyra, how are you today?’ I smile and think to myself, ‘Where would you like me to start?’ (I say I smile, but the smile probably doesn’t make the journey from my mind to my face).
Karen shares an incredible story with me. A university friend of hers, who she lived with in Teddington & Fulham in the early 90s, found Karen on Google this week. Her friend had discovered last year’s Green Day flyer, we can only assume.
Apparently this friend’s mother, who lived in Windsor at the time that Karen and her friend were studying together at St Mary’s College in Twickenham, was also diagnosed with PSP in 2012. The friend and Karen, out of touch with each other for years, had been living a parallel PSP experience through the same journey with their respective mothers. This is remarkable, largely because the illness afflicts so few people. To find that someone you’d shared the formative years of your life with had experienced this parallel journey.....the chances must be very small.
We have our usual one way conversations. I love them but feel so frustrated that I can’t respond or tell Karen or anyone how I feel. Today though, was different.
After telling me about her friend’s parallel PSP journey we discussed two things. Firstly the fact that Karen was heading to India on business for a week (I could tell she was worried about going as we don’t really know how much longer I have to live) and then also the results of the last Barrister Training assessment that she’s taken were due to be published and she knew she’d probably failed the very last one; (Karen has been in Barrister Training part time at Northumbria University for the past two years. God knows why…).
I think she’s brave and driven, but also daft. She’s been elected as a councillor recently and runs a business with her husband. She has a beautiful son. Why bring more pressure upon yourself? She seems relentlessly and obsessively ambitious to make a difference in the world in a way that I admire, but never really felt was necessary. I never harboured any great ambitions. I was happy going to work, doing a good job, having holidays in Spain and being a good mother to Karen and a good wife to Bobby. I try to tell her she has nothing to prove, but like the smile in my head, the words just don’t make the journey from my mind to my mouth.
That’s why today was different. Karen read my mind and mother and daughter were one. She said my words for me. Her mind and heart and my mind and heart were the same thing, for several minutes. Her voice became my voice. She’s convinced she’s let everyone else down. The commitment to the training was extremely consuming and distracting. She said what she desperately wanted to hear. She knew exactly what I would have said: ‘Mam, I need to go to India for good reasons. I can get back quickly on any day. As for the Barrister exams, I know you’re telling me I did the best I could, I’ll put the skills to good use and I know you are saying to me ‘it doesn’t matter what the result is ...you studied at the Bar in your 40s. You only failed one of many that you took. You did the best you could. That was great. Maurice and Ethan and your Dad and me and your aunt, we are all proud of you. Just be happy, live in the moment and always just keep trying to be the best you can. That’s all that matters in the end’.”
I am Moyra’s daughter. Moyra has been my brilliant Mam. I’m on a flight to India now, as I write this. She’ll be there when I get back next week, in her special moving bed, or perhaps somewhere better soon......in a happier place...and relieved. Relieved of this terrible thing called PSP. ‘Mam, I can hear you. I am Karen and I am your voice.’