Don’t Write When You’re Angry and in Pain

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It is said that you should never write when you are angry.

Today, I am breaking that rule.

This is not completely raw. There are drafts that I have already discarded because they were too raw. But I am angry. I am in pain. And I feel that I need to try to explain what is happening inside my mind.

The nerve pain has returned at the same time as the photophobia. For the last few hours I have experienced the sort of thoughts that pain can produce, thoughts that I know are emotional rather than rational, but which nevertheless feel painfully real.

Above all, I feel increasingly useless.

That is perhaps the hardest word I have ever written.

For most of my life, my identity has been built around giving. Being a provider. Supporting my family. Helping friends. Teaching colleagues. Looking after others. Trying, in whatever small way, to make life a little better for the people around me.

PSP is gradually taking that identity away.

Alongside the relentless pain, which has now forced me to take opioid medication, and the discomfort caused by light and, at times, even noise, I find myself becoming someone I barely recognise.

I am no longer able to be the son, husband, father, brother, uncle, friend or former boss I once was. Instead of helping others, I increasingly need help myself. Instead of being the person who gives, I am becoming the person who depends on others.

That is a painful transition.

Perhaps even more painful than the physical symptoms themselves.

Pain and discomfort changes people.

It can make us irritable. It can make us withdraw. It can make us ask for the lights to be turned off, the television to be lowered, the conversation to stop. It can make us become the person others quietly hope will feel better soon, not simply for our own sake, but because they don’t know how to help. It can make us sad and frustrated and want to step away.

I understand that.

In fact, there is a part of me that wants those I love to stay away. Not because I love them less, but because I love them so much that I want them to enjoy their lives without carrying the burden of mine.

And yet, at exactly the same time, I desperately want them close.

That is the contradiction.

Love pulls me in two completely opposite directions.

I want to protect the people I love from what this disease is doing to me.

I also want them beside me while it does it.

Both feelings are genuine.

Both exist at the same time.

Living with PSP magnifies every emotion. We are not one-dimensional people. We experience the same complicated mixture of emotions as everyone else, selflessness and selfishness, reason and emotion, gratitude and frustration, contentment and jealousy, but under the relentless pressure of a progressive disease, those emotions can become overwhelming.

That is why I believe we all need to show one another as much empathy as possible.

Patients need understanding.

Families need understanding.

Neither side has chosen this.

This disease is truly horrible.

Yet despite everything, I still trust that God has a plan. I am not angry with Him.

What I do feel is a responsibility to try to explain these emotions, not because they are unique to me, but because I suspect many others living with PSP, and many who love someone with PSP, experience exactly the same conflict but struggle to put it into words.

If this helps even one patient feel less alone, or one family member understand their loved one a little better, then perhaps writing while angry and in pain was not such a mistake after all.

My prayer tonight is simple: for as little pain as possible, for strength to keep loving well despite it, and for God to spare those I love and all those living with PSP and those who care for them as much suffering as He can.