Stubbornness, Goals and Three “Non-Falls”

I am definitely stubborn.

I don’t think I am stubborn in the worst possible way. I do listen to people. I take advice on board. I change things when I need to.

But I really don’t like moving away from a goal once I have set it.

I had an interesting discussion today with a friend visiting from London about exactly that. We talked about the goals I set myself and whether sometimes I stretch them too far.

Is it genuinely too much for me to try to lead the services in a few weeks? Why am I doing it? And what happens afterwards?

These are fair questions.

My last really major goal was my daughter’s wedding.

I reached it. I danced with my daughter. And then, almost immediately afterwards, I crashed.

I had used everything I had. My body simply gave in and I literally had to be dragged home early, unable to move properly until I was eventually put into bed.

Would I change anything?

Absolutely not.

There is no question it was worth it.

So too with the prayers.

I know there is a risk involved in pushing myself towards another major milestone. I know there may be a price afterwards. But this time there is also an important difference: I have a backup.

I stubbornly hope I will not need him, although he is very definitely owed my gratitude for being there.

One of the great challenges of this disease is that no two days are the same.

Yesterday I wrote about being in a good place. Today I still am.

But today I also had three fairly dramatic reminders that being in a good place does not mean everything is suddenly good.

First, I fell properly out of bed. I was putting on my eye mask, must have become distracted, and suddenly found myself hitting the floor. Fortunately, my backside took most of the impact and, as previously established, it has a reasonable amount of natural protection.

Then, in the bathroom, I listed very precariously to the left and would probably have gone down if my carer had not caught me.

Later, while doing yoga, I lost my balance again while sitting with my legs underneath me and toppled to the left, this time hurting my back.

I am reluctant to describe all three as serious falls because none involved me falling from my full height of 1.94 metres. That distinction matters to me because avoiding exactly that kind of fall is one of the reasons I made the decision some time ago to use the wheelchair virtually all the time. My balance simply is not up to it.

But whether I call them falls, near-falls or warnings, three in one day is enough to get my attention.

And that brings me back to stubbornness.

There is a fine line between being stubborn enough to keep moving towards something important and being so stubborn that you ignore what your body is telling you.

I do not want to cross that line.

Tomorrow will almost certainly not be like today. That is one of the few things about this disease that is fairly predictable. Almost anything can happen.

So my plan is not to stop.

My plan is to engage my brain, keep pushing towards my goals, take as many sensible precautions as possible, adapt when I need to, and keep moving forward.

It is a little like a long road trip.

There will be traffic jams. There will be diversions. Occasionally somebody will cut you up, which is statistically ALWAYS the other person’s fault.

You may have to slow down. You may even have to change the route.

But that does not necessarily mean changing the destination.

Stubbornness has strengths and weaknesses.

My job is to harvest as much of the strength as I can while trying to limit the weakness.

I may well have a difficult period after the next major goal. If I do, I will deal with it then. And after that, I hope there will be another goal.

And another.

For now, I will continue preparing to lead the prayers.

I will also sleep closer to the middle of the bed and be considerably more careful when sitting upright on my knees on the yoga mat.

There is ambition.

And then there is common sense.

I am hoping there is room for both.