Clara, an erudite linguist not shy of picking me up on the odd grammatical error, surprised me the other day when she asked me what was ebb and what was flow.
“Ebb is when the tide goes out and flow is when it comes back in again,” I told her.
“Thanks. I wasn’t sure
which way round they were,” she explained.
Later, I looked it up,
just to be sure. Wikipedia explains it better than I can:
Ebb and flow are two phases of
the tide or any similar movement of water. The ebb is the outgoing phase, when
the tide drains away from the shore; and the flow is the incoming phase when
water rises again. The terms are also common in figurative use.
The reason this came
up was that we had been discussing the ebb and flow of my Parkinson’s. Just
when I thought I had tamed my disease – finally in control, I had been musing –
I had a bad week.
Work was a real struggle
from first thing Monday morning, but particularly difficult on Tuesday. When leading
a workshop with a client, I was presenting various materials on a big screen
from my laptop: three hours of constant fumbling with mouse and the keyboard
ensued. I fumbled my words too, and strained to make eye contact as my vision
turned to a blur. And my audience had difficulty hearing my soft voice to boot.
At lunchtime, soup was
not the best choice as my tremoring hand struggled to keep liquid in spoon. I proceeded
to eat my main course like a child learning basic use of cutlery. In the
afternoon, I battled to stay awake until home time, wishing people would stop
talking to me and just go away.
Perhaps I am now
under-medicated. After all, I’ve been on the same dose of pramipexole for well
over a year. But this is the reality of living with Parkinson’s. There are
good weeks and bad weeks. On days and off days. Inexplicably, it ebbs and
flows.
In line with my new 4½ day working week, I took Wednesday morning off. I also slept in on Friday and dialled
into various meetings whilst still in my dressing gown at home.
By Friday evening I
was more or less done for, but I had arranged to meet an old friend over dinner
in central London, someone I hadn’t seen since before my diagnosis, and I
wanted to keep my appointment.
Over bread and starters
in the noisy French restaurant, Aaron and I engaged in small talk about family,
work and the good old days.
After my côte de veau
had been served, there was a suitable pause in conversation, and I told him
about my Parkinson’s.
His response surprised
me.
“Yes, I know all about
Parkinson’s. My dad had it for 20 years. He was diagnosed when he was 53 but sadly
he died a couple of years ago. But not of the Parkinson’s. He died of cancer. A
brain tumour.”
No more small talk:
onto the important stuff.
It was interesting and
helpful to hear from someone who had first-hand experience of a close relative
with the disease. Although there were difficult times, and an unwillingness on
his father’s part to talk much about it, there were positives too.
“One of the things he
did was to retire early. He and my mum did a lot of travelling together. They
probably did a lot more than they would have done had he not been diagnosed. South
America, Africa, you name it. They had a great time, right up until the last
year. And even then, it was the cancer that stopped him, not the Parkinson's.”
In spite of Aaron’s
dad’s unfortunate end, I found the conversation very inspiring. I hope to learn
more from his experience.
On the way home, I reflected on the discussion with my old friend. There will be plenty more bad weeks like this week. But there will be plenty of good weeks too, and there is a lot of living to be done in the good weeks.
In short, as well as
ebb there will be flow. And when the tide rises, so I need to rise with it.
