In March, six easy miles from Forres to Findhorn Bay
The beautiful Moray Firth; wobble onto the beach,
A fall in the village, but I get up on my own.
Ten times around Kings Langley Common,
You say I have ALS, but things seem pretty ok.
‘Mr Knowlman, I think yours will progress slowly’.
Vicarage Lane, the hill up to school; no sticks up and down?
‘Daddy, why can’t you run and hit the tennis ball back?’
Fasiculations , do you know this word?
Muscles tremor, you do nothing; it means the brain is not so much in control.
Like the breeze before the storm; the precursor of things to come?
Ten laps of the Common, now three. No sticks, now two.
‘No daddy, you don’t need sticks in the house’. Well, yes.
Vicarage Lane; feels like an Alpine ascent; going down in the car now.
45 minutes to get showered and dressed;
Never thought moving in the bed could be so hard.
This is how things are today.
Surely not the arms? Cooking was fun, but lifting pots, pans and kettle beyond me just now.
My left finger seems not to push down on the fork; that neat handwriting has lost some shine. That laptop is heavy.
Still, other six fingers and thumbs good.
Chest feels like I’ve just done three reps on the bench press, but I just woke up.
Last night, fasiculations in the neck; not the first time. Are they the swallowing muscles? I’ll be ok.
A bathroom emergency; can I make it up the stairs? Well, yes.
So many good things, African drumming with Abdul, walks at Chipperfield, lifting up a cup is fine;
Listening to Sebastian read; what progress that boy has made;
Valentina looks down from 13 metres up the climbing wall;
A world around me; help, kind words, frustration, anger, tears and joy. The warmth of friends.
New ideas to help stabilise it; I try the ones I trust the most.
‘Mr Knowlman, I think yours will progress slowly’
The last six months like being in a hurricane;
Changes almost week-by-week.
Physics, OTs, GPs, consultants, DNR, Advanced Declarations, counsellors;
Foot-up device, perching stool, special chairs, wheelchairs.
Keep family life together; how must it feel through eyes of children, grandparents, and, of course my wife?
A fresh drizzle falling outside; the horse chestnut leaves falling now,
Time to put new waterproof sneakers on now,
Kings Langley Common here I come.