The Slowdown: When Everyone Else Is Busy

As I sit here recovering from another painful episode, I am reminded how differently illness changes the rhythm of life.

Most people my age are busy. They have jobs to do, families to raise, grandchildren to see, holidays to plan, and a hundred other responsibilities competing for their attention. Their days are full. Mine, increasingly, are not.

This is not a criticism of anyone. Quite the opposite. I am fortunate to have friends and family who have been extraordinarily kind. Some have flown out to see me. Others have helped my family in ways they never had to. I am constantly reminded of how many genuinely good people there are in my life.

What illness teaches you, however, is that it changes your relationship with time.

While others are rushing between work meetings, family commitments, school events and social plans, I am often trying to work out how to fill another afternoon. As I sit here popping pills, alternating between hot water bottles and frozen peas, and occasionally vaping CBD in the hope of staying comfortable, the world continues to move at its usual pace.

Nobody is doing anything wrong. We are simply living at different speeds.

Perhaps that is one of the less obvious consequences of developing a disease like PSP at a relatively young age. The losses are not only physical. Activities that once filled your diary gradually disappear. Energy becomes more limited. Opportunities become fewer. Yet time itself seems to expand.

The challenge is not that people stop caring. Most certainly do not. The challenge is that the people around you are often racing from one responsibility to the next, while you may be trying to work out what to do with the next few hours. It can create a sense of isolation even in the midst of being loved.

I spend a lot of that extra time trying to find meaning and purpose. Writing helps. Staying engaged with the world helps. As often as I speak about the needs of patients and caregivers, I think it is equally important for patients to understand the pressures on those who love them. Caring about someone does not create extra hours in the day.

I have always encouraged my children to continue living their lives and not become trapped in the story of my illness. Part of the reason I have a full-time carer is precisely so that my wife and children have the support they need and the freedom to keep moving forward. I would never want them to place their lives on hold because of me.

That means learning to treasure the moments we do spend together. My son cut my hair today. I was probably not the easiest customer, but the gesture meant far more than the haircut itself. Small acts of kindness often carry far greater significance than grand gestures.

The reality is that chronic illness can be isolating, even when you are surrounded by people who care deeply about you. There are days when you are not well enough for company, and others when social interaction requires more energy than you can comfortably spare. It is a strange contradiction: wanting connection while sometimes needing solitude.

So, like many people living with long-term illness, I look for ways to stay connected to the world. Good books, when my eyes cooperate. Good television. The World Cup. Writing. Online chess. Small routines and interests that provide structure and enjoyment. Not because they replace people, but because they help fill the spaces between the moments spent with them.

And perhaps that is the lesson I keep returning to. The people around me have not forgotten me. They are simply busy living their lives, just as I would want them to. The challenge for me is learning to live well within a slower rhythm, appreciating the moments we share rather than measuring the ones we do not.

Nobody is doing anything wrong.

We are simply living at different speeds.