To start and re-start – The Hospital Hokey Cokey

“Start where you are” is a simple little kernel of wisdom used by the Buddhist meditation teacher and writer Pema Chödrön for those wanting to begin or get back into a meditation practice when it doesn’t seem clear how to do so. How to start or indeed, how to re-start? Similarly, as a general piece of advice for life, Arthur Ashe, the famous tennis player said, “start where you are, use what you have, do what you can”. Starting from exactly where you are seems like sage advice – it is after all the only place to start from. The past has already happened and it is not possible to start in the future, yet we all do tend to allow both past and future to affect the here and now unduly.  Today I find myself in a situation where starting again feels impossible: after a year slowly progressing down the track of recovery from serious respiratory illness in February and March 2023 and making really good headway, in November 2023 I found myself flung back to the starter’s block. What I have now named the “hospital hokey cokey” began as I went “in-out, in-out” twice more after that.

I had contracted what for most people would be a simple respiratory virus. However, for someone with advanced lung disease like mine (“type 2 respiratory failure”) this little bug had nasty and far more serious consequences. I was barely able to breathe on my own, almost drowning in my own mucus. Physiotherapists came to help purge me by sucking, shifting and blowing the mucus out of my lungs with the help of bizarre looking contraptions (such as one called “the bird”).

Ten suffocating days later, I came home. Even a few days in hospital severely affects muscular strength and, with my physical “baseline” already being so low, I found myself considerably weaker and sometimes barely able to walk from room to room without a struggle, even with my prescribed oxygen. It felt like I had been significantly knocked back and needed to start from the beginning.

So I did. Small steps. In my case, literally: walking round the rooms inside the house. Climbing a few stairs. Soon I was doing quite well.

Then my oxygen levels overnight started to drop, I started having fevers and to cut a long story short a week before Christmas back to Kings College Hospital I went with a presumed hospital acquired bacterial infection.

And then repeat! On Christmas eve, I was sent home on IV antibiotics, and started all over again … only for the whole cycle itself to start again almost exactly like the last time. Evidently the antibiotics had been stopped too quickly and after more grappling with well-meaning community-based teams, I went back to Kings yet again for a third time in 5 weeks.

That’s five admissions in one year! In my life’s game of Monopoly, rather than passing “GO”, each time felt like I had drawn the GO TO JAIL card. To start the process of rebuilding strength and general rehabilitation from the beginning over and over again truly feels overwhelming and like a prison sentence that may well never end. When you are trying so hard to keep as fit and active as possible, each setback feels like fate has not just kicked you in the teeth but actually knocked out yet another.

In fact, I have had to re-start this blog three four times as each time I get ready to publish it, back I go again into hospital. This time, I am keen to publish it before anything else happens! Whilst there is a glimmer of hope that some stability is coming and my dear Christopher and I are going to get a respite from hospitals, still there are a few dark clouds lingering on the horizon, threatening further illness and hospitalisation.

It can feel like a lonely and despondent place being knocked back repeatedly. I have lost a lot of confidence, my lung function has deteriorated and I find I can’t do what I used to. Frustratingly and sadly, this may not be just temporary as it seems likely these infections have left my lungs even more damaged. This is the undeniable trajectory of the disease – I am prone to infections, (I even more so due to my underlying immune disease) which leave the lungs a little worse off than before so over time, with repeated inevitable infections my lungs will continue progressively to fail.

“Start where you are, use what you have, do what you can”. Small Steps. Even baby steps. Perhaps just crawling. Slowly trying to crawl back along the long road to some sort of normal functioning. Except even crawling gives an impression of faster headway than I feel like I am making.

Rather like the business of living, when it comes to the business of writing again or in fact just thinking about the rest of my life, it is useful to try and just start each day anew and not think about the future too much for fear of feeling overwhelmed. Very much easier said than done, I know. In order to re-build, there is a need to fully accept where you are in the moment and start from there and proceed slowly.  The trouble for me is accepting my current weakened state and wanting results too soon– it feels very painful to have dropped so far behind the curve.

My lifelong habit is determinedly to adopt a “boom or bust” approach to most things in life, taking on too much too soon, biting off more than I can chew and then sometimes not managing to accomplish what I set out to. This leads to an increased sense of failure.

Boom or bust just doesn’t work for me anymore. Better to start where I am and aim to do a little at a time. For example, in my case, my legs are very weak so I will aim to do a few “sit-to-stands” every few days, use my exercise bike on a low setting for 10 minutes only and aim to increase slowly. This way I can build my confidence gradually,

“knees bent, arms stretched, ra, ra, ra.”

At least, that’s the theory. Same is true of my writing whether it be journals or blog posts, I must simply start where I am, do the best I can and just write – it could be a useful way of paving over some of the potholes of worry and despair that impede my path ahead.

Just somehow I have to find hope for the future even in what feels like a fairly hopeless situation. I need to find strength to cope with the symptoms of breathlessness to carry on living this breathless life as fully as possible. One day at a time. I just have to:

“do the hokey cokey and turn around.
That’s what it’s all about.”