What Were You Doing Last Easter?

Tomorrow, it will be four months since we received the diagnosis.

Four months. A third of a year. In a blink of an eye, it has passed us by.

If six people are diagnosed in the UK every day, then since that day 732 more people have been diagnosed. 732 more families are feeling how we felt that day.

660 have been diagnosed since the first time I clicked ‘post’ on Daughter of MND.

The numbers are staggering. In a population of millions, 5000 doesn’t seem like a lot, but to think that approximately 732 people’s lives have changed since Easter – it makes you stop. It makes you think.

Most people reading this blog will know what they and their families are going through. 732.

What were you doing last Easter?

 

Four months on, for my family, the shock has gone and the fear has largely been replaced by the demands of practicality.

Finding a balance is still difficult, especially for my sister who sees Mum everyday, despite working full time. Mum does need slightly more care than she did four months ago, and preparing for days out takes more time. We can’t just hop on a bus and away we go – not anymore.

For me, my fortnightly trips have become routine. I’m on my way now, sat on the Virgin East Coast service to Leeds. These two hour and fifteen minute journeys have become almost therapeutic – five hours a fortnight where I can get some reading done, or some sewing, and mentally prepare myself for whatever the weekend may bring. It seems unusual that before the diagnosis, I hadn’t made this journey for four months. Now I’ve been doing it every two weeks for four months.

MND has changed our lives, that can never be in question. Sometimes, there are still tears. Sometimes, we do feel scared – especially my mum.

But MND isn’t defining our lives. It’s like a shadow – always there, but largely looked over. We don’t stare at it all the time.

Even when Mum is in her wheelchair and using her iPad to speak (or wolf whistle at strangers in the street), we’re not thinking ‘MND. THERE IT IS. THIS IS MND, AND SHE IS MND, AND MND IS HER. MND. MND.’ We’re thinking ‘Oh crap that old man heard the wolf whistle while he was bent over in his garden and thinks my mum is absolutely bloody bonkers because she’s cackling away and I’m struggling to push her up this flaming hill’. (That genuinely did happen.)

If someone had told me four months ago that I wouldn’t see the disease whenever I looked at her, I think I would have been doubtful. If someone had said it would be an ever-present thought in the back of my mind, but wouldn’t cloud my eyes the way it did in those first few weeks, I would have hoped they were right. And, thankfully, they were.

Perhaps this is easier because she is doing well, considering the average life expectancy for someone with PBP is so short. Perhaps it’s because my sister and I have always been so close, so we know how to support each other.

Honestly, I don’t know where the strength comes from. I don’t even consider it strength anymore. Four months ago I wasn’t sure how I would cope every day, how my life could possibly be the same.

And it isn’t the same. It never will be the same. But it isn’t all despair, and isn’t that what I was really scared of?

I hope you have had a good four months. I hope you had a great Easter and made yourself sick from all the chocolate. I hope you had a beer too many over the long weekend, and went back to work on the Tuesday feeling refreshed.

Whatever has happened in the last four months, I hope you find a new path, a way of coping and living with MND. Whether you or your loved one is one of those 732, or whether you’re still fighting, or if you have lost someone, we have an amazing ability to come through the storm and find a way for each day to be new.

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