Two Voices

No, I am not going mad. But there are two voices conducting what feels like an Oxford Union debate inside my head, and most days neither one concedes the floor gracefully.

I have deliberately not named them. Though at times they feel suspiciously like Thing 1 and Thing 2 in a particularly bleak Dr Seuss adaptation.

Let’s just call them Voice 1 and Voice 2.

Voice 1 is telling me that I am actually in pretty good shape this morning. My speech is decent. I managed a session on the exercise bike with my carer. My legs are hurting less than they were yesterday. There is only one treatment today, plus a doctor’s appointment, and otherwise the day ahead is relatively calm.

Voice 1 is not attempting some motivational TED Talk here. It is simply pointing out that these things are real too, and asking why they should count for less than everything else.

Voice 2 is having none of it.

Voice 2 says this is spin. A carefully curated version of reality dressed up for me and for the people reading this blog, as was my post earlier. Yes, the legs hurt less than yesterday, but yesterday was worse. That is not recovery. It is merely the gentler end of a spectrum that still runs through pain and deterioration. The disease remains exactly where it was when I woke up this morning: active, progressive and entirely indifferent to whether I am feeling optimistic about it over breakfast.

Measured against my own recent baseline, this morning may qualify as “good.”

Measured against ordinary life, it is what it is.

As Voice 2 puts it, with characteristic warmth and diplomacy, it is like congratulating yourself for stepping into the smaller pile of manure.

Voice 1 objects strongly to the metaphor but cannot entirely dismantle the argument.

Last night my wife mentioned she was planning to pop to our married daughter’s apartment to pick something up, and that today she is going to the wedding of friends’ child. As it happened, she never went to the apartment in the end, but that is completely beside the point.

And I want to be crystal clear: none of what follows is criticism of my wife. Not remotely. She is a star but the point is important.

Voice 1 says this is simply the new reality now.

My daughter’s building has stairs that are very tough for me. I bum-shuffled them exactly once and I hope to do so again but it requires serious effort, not the stuff for a quick pop in. Weddings have become almost impossible for me to tolerate: the noise, the bright lights, the crowds, the strange exhaustion of trying to appear socially functional while your nervous system quietly screams for retreat.

So my wife goes without me if she goes.

This is not cruelty. It is not rejection. It is adaptation.

Voice 1 considers this a sensible and compassionate arrangement and sees little value in repeatedly mourning what cannot currently be changed.

Voice 2 does not move on so easily.

Voice 2 says the saddest part is not even missing the wedding itself. It is that my absence has quietly become assumed. The default setting. Nobody is being callous. Nobody says it aloud. There is simply no longer any real expectation that I will be there.

There was a version of me, not very long ago, who would have wandered unannounced into my daughter’s apartment, opened the fridge, stolen something unhealthy, taken over the sofa and generally behaved like the mildly irritating but unmistakably present father that daughters everywhere eventually learn to tolerate.

That version of me was not extraordinary.

He was ordinary.

And ordinary, it turns out, is something I am grieving. Voice 2 says: she should not have to walk into that hall alone. She should not be navigating seating plans for one because her husband can no longer survive environments he once moved through without a second thought.

These are the losses that never make it onto the symptom checklist.

The neurologist asks about swallowing. Falls. Speech. Eye movement.

Nobody asks: how does it feel when your family slowly stops expecting you to show up?

Voice 1 counters that this is precisely why the anxiety matters. Crowds and sensory overload genuinely harm me now. Avoiding certain situations is not surrender or self-pity. It is protection. It is adjustment to neurological reality. There is wisdom in not repeatedly throwing yourself against limitations that are not going to disappear because you resent them.

Voice 2 replies that there is also wisdom in looking directly at what is happening.

The label matters. PSP matters. Trajectory matters.

Reading too far ahead in the textbook may damage me psychologically, but pretending the textbook does not exist is hardly a serious strategy either.

And so the debate continues.

Most days I try to keep Voice 1 in the chair for longer. To let it finish its opening remarks before Voice 2 storms the podium with its stack of uncomfortable truths.

But Voice 2 is not entirely the villain of this story.

It is the part of me that refuses to reduce suffering to inspirational messaging. The part that insists grief should be acknowledged properly rather than constantly reframed into resilience. The part that knows honesty and despair are not always the same thing.

Neither voice is completely wrong.

One is trying to help me live. The other is trying to help me prepare.

The Oxford Union debate continues.

No vote has been called yet. And both sides know that eventually, one of them will stop showing up to debate.