The Job I Never Applied For

I looked at my calendar for the week: empty. My inbox: mostly spam. My travel plans: none. My week is largely a blank canvas. PSP will decide much of what gets written on it. You would be forgiven for thinking I have very few responsibilities left as a patient. Oddly, the opposite is true, and I think it applies to all of us who find ourselves handed this unwanted job.

For decades my days revolved around work, travel, solving problems, making decisions and helping other people achieve their goals. My diary was planned down to the minute. Every hour seemed to have a purpose.

Today my circumstances are very different. With PSP, I have no idea what this week, or even the next few hours, will bring.

What I have discovered, though, is that while my control has become smaller, my responsibility has become greater.

Although I cannot choose what PSP does to me, I can still choose what it does through me.

I no longer lead a team. I no longer travel. I no longer actively contribute to my family’s finances. I rely on my wife, my family and my wonderful carer for many of the things I once did without thinking.

As illness steadily takes away my independence, it is easy to assume my responsibilities shrink with it.

Over the past year I have realised the opposite.

Whether I like it or not, I help set the emotional tone for the people around me.

Will they see a smile or a frown? Feel gratitude or hear complaint? Will I allow pain to dominate every conversation, or acknowledge it without allowing it to define the day? When I write, will I spread despair or hope?

None of those choices changes my illness.

PSP follows its own unpredictable course. Some days are manageable. Others are brutal. I cannot control the uncharted river ahead, but I can still choose how I travel through it.

That is the job I never applied for.

No interview. No invitation. It simply arrived.

My responsibilities are fewer than they once were, but perhaps they matter more than I realised.

I can make life a little lighter or a little heavier for the people I love.

The same is true of my writing.

Many people who read these blogs are friends and family. Others are fellow patients, carers or people trying to understand someone they love. My words can leave them discouraged, comforted, understood or hopeful.

That is a responsibility I take seriously.

Ironically, I began writing this article feeling discouraged as I stared at my almost empty calendar. Yet by the time I reached the end, nothing about my circumstances had changed. My eyes were still watering. Reading was still difficult. My calendar was still empty.

What had changed was my response.

Looking back over my life, I remember people who faced enormous challenges with remarkable grace and stubbornness. They did not remove the difficulty. They reminded me that the way we carry suffering is rarely a private matter. Courage, hope and kindness spread quietly from one person to another.

Perhaps that is my role now.

The job I never applied for was not to keep earning, organising or leading.

It was to become someone whose presence brings hope rather than discouragement, perspective rather than self-pity, and calm rather than anxiety.

I will not succeed every day. Pain, frustration and fear will often get the better of me. I am human.

But despite my almost empty calendar, there is still one appointment that matters every single day.

Not with a doctor. Not with a therapist. Not with a client. With myself.

To decide how I will respond to whatever the day brings.

I believe this responsibility belongs to all of us who live with serious illness. We may not all write blogs, but every one of us still has something to give. Sometimes it is no more than a smile, a squeeze of a hand or a few gentle words. Those moments may seem small, but for someone we love they can mean far more than we will ever know.