A Letter to Me

This week Robert Joyce writes a letter to his newly-diagnosed self.

Dear Robert,

Yesterday you were told you have Multiple Sclerosis by your neurologist. You made your way home on the Tube, spoke to your Mom, changed into your suit and then went to work. The information in the encyclopedia seemed grim, but you didn’t feel so bad.

But I remember.

Over the next few weeks you will realise what this diagnosis might mean and you will visit an MS community centre where you will see old people with MS swaddled in their blankets, detached from the fast-paced world you’re hoping to make your career in. This contrast tears you apart. How will you live knowing you will end up crippled, unable to live without help?

You will lead an interesting life. You will have two amazing children, you’ll get married and achieve work goals you never dreamed of, including producing a TV series. 

All these events in your life have will show you have resilience, a power strengthened in adversity, a dogged determination to never let MS fully control your life. Learning to live within the boundaries it creates will be difficult. You will shed tears for the life you could have lived, but this life has given you something you might never have learned.

Gratitude for what you have.

I know that sounds airy, fairy and intangible. Gratitude doesn’t buy houses, cars or holidays.

But this is what you will learn.

For 28 years you have lived with this diagnosis, you have faced a devastating recession, a serious health issue in a loved one, broken hearts and now you are facing a world pandemic, COVID-19. All the issues you faced, before they happened you would have feared the outcome. The amazing thing is, you’ve found your way through those problems and have come out the other side. You’ll be a bit wiser and now you’ll take pleasure in the small things you have.

As I write this, the entire world is in a state of crisis. A new virus is spreading and the world is trying to combat it through science & intelligence. There is no cure. Those most at risk of this strain are older people and people with health issues, people like you. My MS is compounded with asthma and sarcoidosis. This puts me in a vulnerable category. 

How am I facing this apparently cataclysmic situation? The doctor's advice is for me to stay at home, away from other people and I am doing this. It does not mean I am isolated. In fact, I am part of a large community that supports each of us. Individually we are weak, but together we are strong. Because I now have Secondary Progressive MS, I am used to being at home, I am used to living on a small amount of money. The need for consumption of ‘stuff’ is a distant memory. 

As I write this, it is St Patrick's Day, 17th March 2020; the Government has cancelled all the parades and festivities but on Social Media people are sharing the parades in their houses, farms and neighbourhoods. I can hear music, singing and the laughter of children. It brings me joy to see and hear these. It brings light into the gloom. 

Robert Blog

What will the future bring?

No doubt there will be economic difficulties, and maybe I will end up in hospital, with an uncertain outcome. How is this impacting me? I am anxious, and concerned for those I love, but I am looking out on a tree in the back garden, and the buds are growing. Despite the rain and virus, life will prosper and I will find a way to live in this uncertain future with peace.

Life will throw many curve balls at you, MS is just one of them. Don’t let it dominate your life. Give yourself the chance to be grateful for the love you feel for the people around you. Enjoy the sound of waves crashing on the rocks, the heat of the sun on your face, the dancing rain on the roof. Take pleasure in these. Avoid focusing on acquisition as you will never complete this task, you will always be looking for more.

Now I must finish this letter, go and cook dinner, create something wonderful from simple ingredients. When I see it eaten, people with smiles on faces, I will know I have achieved something special, something simple, something I will repeat. Something to be grateful for.