A Letter Many May Never Be Able to Say

Most of us prepare for the practical things.

We write wills. We organise our finances. We leave passwords, insurance details, spreadsheets and instructions. We spend hours making sure the people we love will know what to do when we no longer can.

But after many conversations in PSP and other neurological support groups, it struck me that we often leave the most important thing unsaid.

Not because we don’t want to say it.

Because one day we may no longer be able to.

This is not my personal letter. I am sharing it because I hope it gives a voice to many people living with progressive neurological diseases who may one day lose the ability to express what remains in their hearts, and to those who never had the chance to say these words, even though they carried them within them.

I sincerely hope this letter remains nothing more than a draft for many, many years to come.

But I have read too many stories from people who believed they still had plenty of time, only to discover that life had other plans.

If this letter is never needed, no one will be happier than I am.

But if that day ever comes, I hope this letter says what I no longer can.

If you are reading this, there may be things I can no longer say. Perhaps I cannot find the words. Perhaps speaking has become too difficult. Or perhaps I simply couldn’t bring myself to say it because I never wanted to burden you with what was happening inside me.

So please let this letter say what I may no longer be able to.

The person you have always known is changing. Progressive Supranuclear Palsy is doing that. It is not my choice. It is not a lack of love. It is not a lack of caring.

There will be moments when I seem distant, when I appear angry, frustrated or withdrawn. There will be times when I seem apathetic, when I don’t respond, when I don’t reach for your hand, when I don’t join in conversations, or when it seems as though I have stopped caring.

I know I have withdrawn into myself, and I know those moments will hurt.

You may wonder whether the person you married, raised, grew up with or loved is slowly disappearing.

Please don’t mistake the disease for me.

Behind the silence, behind the blank expression and behind the lack of words or emotion, I am still here.

I still love you. I still know what you mean to me. I still notice your kindness, and I still appreciate every sacrifice you make, even if I can no longer find the words to thank you.

If I cannot smile, it does not mean I am not happy to see you. If I cannot say, “I love you,” it does not mean I have stopped loving you. If I cannot comfort you, please know that, if I could, I would.

The illness may change the way I express my love, but it cannot take that love away. If you ever doubt that, please read this letter again.

Please remember me not only as the person I become, but as the person I have always been.

And if one day I can no longer tell you any of this, know that every word here is still true.

Always.

With all my love,

The person you have always loved