Plus points are that I’ve found out I have a condition that could have potentially caused me great harm. Add to this I’m in the care of a compassionate and effective team of medics. Then top that with medication doing its job and the new reality is the right way up. Almost.
Recently a picture of a kaleidoscope came into my mind. That’s a good analogy for the less than plus points. The whole joy of a kaleidoscope is that you can create new pictures with a tilt of the instrument. It’s exactly how my life seems to me.
One picture shows me all the joyful bright colours that give me comfort and reassurance. Those are the days I intend to do something, carry out the plan and feel re-energised at the end of the day. Another picture offers me the reverse when my brain feels like mush, making plans seems impossible and putting one foot in front of another with any energy is beyond me.
It’s an aspect of life I’ve discussed with the psychologist and it’s guiding our thoughts about when I should or could stop seeing her. It’s to be expected that ups and downs happen in recovery. Very seldom can we get away with one straight line going upwards. Ups are followed by a plateau then a slight down step before gaining more momentum for another energy surge. Initially it felt like the steepest of switchbacks which has slightly lessened in intensity. To continue the comparison, occasionally I feel as if I’ve been dropped from one of those fairground towers but without any restraint.
It’s the uncertainty of it that I’ve had to grasp like a nettle that stings to make you pay attention. Whatever certainty I’ve had in planning, actions and energy seems at the moment to have disappeared. This causes last minute cancellations and leaves me open to the charge of unreliability. I wouldn’t argue with that having had to cancel my regular hospital volunteering more often than I like. I’ve given up on booking theatre and film tickets. Optimism is one thing, wasting money quite another.
Now I accept this uncertainty as my new norm. Not because I’m giving in to the condition, simply trying to live with it rather than fight against it.
‘The more constraints one imposes, the more one frees oneself. And the arbitrariness of the constraint serves only to obtain precision of execution.’
I can’t promise to produce works of genius like Stravinsky, but now I hold an attitude of curiosity towards what I do within this framework which currently holds me. What can I perceive and move with in this daily changing landscape? In a fast moving medical scene who knows what research will throw up about the causes, medication and future outcome for patients such as me and my MPN buddies.
This year like others I’ve talked to, I’ve been stopped in my tracks. Made to examine the path I walked. What’s it’s led to is more focus and a determination not to waste the time left. A month ago I talked to a friend in the US whose car was written off when a woman driver veered into her. She expected not to survive and against normal odds did. We agreed that such shocks happen for a reason. Make us concentrate on what and who are important to us.
At the beginning of this six months I mourned for the intended recipient of my kidney. Now I rest in that ‘I only intended good’ statement. Now thinking about the group of people they belonged to, it feels like a fading bruise not a shooting pain.
I adjust. Writing these posts has been therapeutic for me. That’s progress because though I was prompted by my inner guidance system weeks ago, it’s taken me till now to act on the prompt.
The Releasing Voice will continue but I’m widening the scope in future posts and I look forward to sharing more with you.