A Presidential Pardon

The President of the United States can pardon almost anyone.

This morning I found myself wishing I could pardon myself.

Not for something I have done.

For something I may one day do.

That is an uncomfortable thought to admit. I have spent my life believing in personal responsibility. If we do something wrong, we should own it, apologise and try to do better. I still believe that with all my heart.

But I also know there are diseases that gradually steal the very abilities that make self-control possible. Alzheimer’s disease is an obvious example. Progressive Supranuclear Palsy belongs to the same family of tau protein diseases, and it is well documented that, as it progresses, changes in behaviour, emotional control, impulsivity, irritability and apathy may become part of the illness.

That frightens me more than I know how to express.

This morning it was a T-shirt.

Just a T-shirt that I didn’t want to wear.

Something so small should have meant nothing. Instead, it triggered a wave of anger that was completely out of proportion to the problem. I became angry with myself, angry with my wife, angry with my dog and, angry that I was angry with my wife, and yes, angry that I was angry.

Most of all, I was frightened because it didn’t feel like me.

I took some medication. I calmed down. Eventually I returned to something resembling normality, but deeply bruised.

But I could not stop thinking about what had happened.

Was it simply a bad morning?

Or was it the first glimpse (first of many) of a future I desperately hope never arrives?

I sometimes imagine this disease as a train approaching a station.

For a long time I believed it was still somewhere in the distance.

Now I can see it coming around the bend.

Or perhaps I am kidding myself, and the first few carriages have already pulled into the platform.

That uncertainty is one of the hardest parts of living with PSP.

I worry that one day (and even today) people will mistake the disease for the man. That they will see anger instead of illness, impatience instead of neurological change, or apathy instead of damage. I worry that the people who know me will quietly wonder what happened to me.

The hardest part is that I may wonder the same thing.

I know you cannot apologise in advance for things you have not yet done. Every situation deserves its own accountability. If I have hurt someone today, I should apologise today, not hide behind a disease.

Yet neurological disease complicates that principle in ways I never imagined.

So while I still have the insight to recognise these changes, I want to say something.

If one day this disease speaks louder than I do…

If my behaviour no longer reflects my values…

If I become impatient, apathetic or angry in ways that make no sense…

I am sorry.

Not because I expect forgiveness in advance.

Not because the people around me will not be hurt.

They will be.

My wife, my family, my friends and my carers will carry burdens that I can scarcely imagine. Their pain is every bit as real as mine, and perhaps greater, because they will watch someone they love slowly become someone else.

If that day comes, I ask only one thing for myself.

Please remember there was another version of me.

The one writing these words.

The one who loved his family beyond measure.

The one who believed deeply in taking responsibility for his actions.

The one who fought, every single day, to remain himself.

Perhaps that is what I really mean by a presidential pardon.

Not freedom from responsibility.

Not permission to behave badly.

Simply the hope that, if the disease one day speaks louder than I do, you will remember the man before it did.