You never expect to hear that someone you love is dying.
You never expect to hear that there is a 0% chance of someone you love getting better.
You never expect that phone call to come, and you can never anticipate how you will react.
On Wednesday 19th April 2017, that phone call came. It was a normal day at work for me. I was actually feeling quite bored. Nobody was emailing me back, most of my to-do list was done. We were having an office party that evening to celebrate Easter, and everybody was quietly counting down the hours.
My mum had been struggling with her speech since December. Everyone was concerned, but she is as stubborn as a mule – she kept saying ‘I will’ whenever we urged her to go to the doctor. It wasn’t anything serious, it would be fine. We had no idea. I know now that even if we’d received the diagnosis then, it wouldn’t have changed anything. In a way, I’m glad she had Christmas without knowing what was happening.
In February, she finally went to see her GP, and was sent immediately to A&E. Her speech had deteriorated so much that the GP thought she’d had a stroke. She didn’t tell my sister or me until that evening. I was walking through London to an event in Westminster when she told me. But it was all-clear. The MRI scans, the blood tests – nothing showed up. There was no damage. Perhaps the nerves would just repair themselves.
It was at Day 50 when I truly began to panic. The doctors had told Mum her nerves would heal at a rate of 1mm per day. Fifty days later, her speech was getting worse, and I knew they were wrong. It should have healed by two inches – two inches of nerve damage! Something wasn’t right, but they just couldn’t explain it to us.
I knew a little about MND. The Theory of Everything was filmed in my college at Cambridge, and I had done some research when the film was released. I confided in my sister and best friend that I was scared it was MND, that it was the only thing that made sense, but on Saturday 15th April the doctors assured us that it was not. The MRI scans didn’t detect any signs of a stroke, tumour or Motor Neurone Disease.
We spent four days of uneasy relief. MND was the worst possible outcome, in my opinion, so whatever was wrong with her wasn’t as bad as I feared. It was clearly a problem, but it wasn’t that bad.
Then Wednesday came.
In a hospital two hundred miles from where I was sat at work, my mum sat down with her mum and her fiancee, and was told the news which has changed all of our lives.
My sister called me in tears. She is twenty years old – I am twenty two. In the space of one phone call, the world fell from under my feet.
This is the start of my story. Our story. The story of my battered and broken family who are finally pulling together for her, for my mum. This blog will be my companion as we embark on this journey. Together we will face the battles and the heartbreak, and share in the joy my sister and I are determined to generate.
Diagnosis is not the end. It’s the start of a whole new kind of life, and we are determined to live it.