OK – Somehow it is!

OK (Okay) – It is such a useful word. For a British person who struggles with expressing feelings, it is the perfect word – an opt out word. It is therefore a surprise that the word first came into use in Boston and not in the UK.

You can use it as the question or the answer, and it avoids all the difficult things you don’t want to discuss. It allows you to skirt over details that may be painful to articulate, and to some extent it is a great way of avoiding the issues in life – which many will say is a way of not accepting or dealing with a situation.

Yet somehow, it captures something really important – at least to me, as I sit here in the middle of the night drinking a cup of tea.

Yesterday, I met a former colleague and good friend, and as he looked at me, it was clear he felt incredibly emotional as we talked. I talked through many of the things happening to me and probably said “It is OK” around fifteen times. And the deep, honest truth is that it is OK. And that is OK for the time and place I am in.

What am I looking for now in my life? Of course, if Quality of Life were measured out of 10, I could never say I was scoring a 10 – it simply would not be realistic. I am in a manual wheelchair, about to be with a full‑time carer, a step away from a feeding tube, and with about 100 personal challenges I don’t care to list. I am declining fast, broadly in line with the statistical ranges PSP tends to follow, and there is a lot of sadness around. A 6 or 7/10 is a great score, and I am at a 6 or 7.

I am surrounded by the people I love. I am generally comfortable. I have worked very hard for people who treated me very well. I am proud and satisfied with the career and life I have had and that I am able to ensure we are self‑sufficient. I still have my cognition and actively using it for what is hopefully good and with meaning. I have strong faith. And most of all, my wife and I have raised three truly wonderful children I am so proud of – one of whom is about to get married and I am FOTB 

Saying all of this – the entire scorecard, both the truly horrible negatives and the wonderful positives – is very hard emotionally. “It is OK” is accurate and true.

In many circumstances it is an inadequate word that allows people to avoid sharing and communicating, but for me, right now, in this place OK it is apt. It is genuinely OK.

Over the last few days, I have written important pieces on grief, anxiety, the loss of independence, and the accelerating speed of PSP. I think they say a lot about the progression of the disease, and it is all completely valid and I haven’t changed my position at all. It is awful for the patient, caregiver, family and friends.

But as I sit here, I am calm and not feeling stressed or anxious at all. It may be a sort of calm in the storm but I am OK, and I mean it. I can’t promise that it won’t change about 100 times in the next 24 hours but for now, as I sit here in the dead of the night, I am sipping a cup of Yorkshire Tea and having a scoop of Vanilla Ice Cream,  all is OK and I am genuinely good.

I have said many times in the past that I would not swap my position with anyone else in the world. I just asked myself the same question again and, as odd as it may seem, the answer is still absolutely yes. I am OK, Thank G‑d.

Positivity is not just scoring 10/10 – life is not that simple – but for what I am suffering and where I am, I will take a 6-7/10.

I also understand more and more why people ask the question “Are you OK?” It is not insensitive or impersonal – it is natural. And from where I sit, it is OK to say it. It is a way of connecting at a time when it is almost impossible to find any other words, and when other words are almost certainly the wrong ones.

OK is not such a bad word. Now I will go finish my tea.