Flashback to a month ago – insightful then, prophetic now.
Yes, there is news from my trial, but not quite what was expected.
Damage to kidneys and liver still not satisfactory and at the request, instruction of the Neuro team I have been told my trial will be ending.
No “washout” and no chance to evaluate the “new” medication. For me it’s a time-out and for the next week back to hospital for the “close-down” of the trial. Not looking forward to the battery of tests and MRI’s all over again but that is what it is.
Next steps then are in line with Scenario ( Likely ) , re-evaluate and try a different medication , wait to see effects , repeat..
On a more positive note it seems that the cherry tree blossoms on the farmer next doors trees know something. In the space of a few days they are looking amazing…could it be that Spring is actually on the way?
Not too much inspiring things happening this week, Brexit continues to deliver (What I’m not too sure, lots of learning opportunities though on Teamwork, Delivering on Promises, Trust, Competence …)
One of the stand-outs of the week for me was the statement from Boeing regarding the recent tragic crashes of two of their new aircraft. Inspiring indeed to commit to “fixing” and “owning” the problem.
Coincidentally, ( Gibbs rule # 39 – There is no such thing as coincidence ! ) this came in from Seth this week.
“That’s a hard sell.
It’s difficult to get someone (a client, a boss, a voter, a partner) to say those three words. Difficult to say on our own behalf, too.
Which is why we so easily get stuck.
We get stuck defending what we already decided. Because it feels easier to defend than it does to be wrong.
In 1993, in my role as founder of an internet company, I rejected the idea of the world wide web. I saw Mosaic (and then Netscape) and decided it was stupid, a dead end, a technology not worthy of our tiny company’s time.
That decision cost me a billion dollars.
Within nine months, I saw what others were seeing. I saw the power of widespread connectivity and how it was more powerful than a centralized host.
It still wasn’t easy to say, “I was wrong.”
The alternative is, “based on new information, I can make a new decision.”
We can make a new decision on what’s happening to our environment, based on new data and new science. We can make a new decision on corporate governance or on a recent political referendum.
“Why didn’t you tell me that it would lead to all these bad outcomes?”
Not wrong, simply underinformed.
The cost of a do-over is often less than the cost of sticking with a decision that was made in good faith, on insufficient information.
We don’t have to be wrong. But we regularly get a chance to make things more right.”
I must admit when I set out with this exercise this morning I thought I would not have a lot to reflect on this week, again I’m surprised that there was actually a lot – there always is if we take the time to slow down and think.
I follow quite a few MS Blogs – hoping to find something new that I can try to incorporate into my own journey. This came in during the week and I have to share – the title was “The unplayable piano”
“What do a broken-down, out-of-tune piano and multiple sclerosis have in common? Well, they’re both disorderly and confusing, to say the least. But there’s something else — they have the potential to bring about something positive.
I learned this from a podcast called “Hidden Brain,” specifically from an episode about the value of embracing chaos. In the second half of the episode, host Shankar Vedantam interviewed Tim Harford, author of “Messy: The Power of Disorder to Transform Our Lives.” They discussed many examples of moments in time when great art, inventions, or revelations only came about because of chaos or confusion. The most fascinating example Harford mentioned was that of “The Köln Concert.”
Keith Jarrett, the pianist, arrived to play an improvisational concert in Köln (Cologne), Germany, only to discover that the piano they’d secured for him was out of tune and tinny. Some of the velvet pads were worn down and didn’t strike the strings cleanly. The notes in the upper registers didn’t work. Neither did the pedals. But rather than give up on the concert, Jarrett did what he did best — he improvised. He stayed away from the higher register. He used more bass. He pounded on the keyboard. And in doing so, he created the best-selling solo jazz album of all time.
With less than optimum tools, Jarrett created something he never would have tried on a perfect instrument. Great art came not in spite of the handicap, but because of it. And this isn’t a revelation reserved only for the super-intelligent or gifted. Harford argues in his book that, like Jarrett, “very often we’re faced with the unplayable piano” in life but we can “produce something great out of it.”
After listening to this episode and the recording of “The Köln Concert” linked above, I started to ask myself some interesting questions. My body was working perfectly well up until the time I was diagnosed with MS at 25. I had never broken a bone. Never undergone surgery. I didn’t have a single allergy. My body was like a perfectly tuned Imperial Bösendorfer (the piano Jarrett was supposed to have that night). And then something broke.
A lesion appeared in my spine. A few more cropped up in my brain. My legs stopped working. I felt myself becoming part of W.B. Yeats’ poem “The Second Coming,” in which he states:
fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;”
I was broken down in body, mind, and spirit. I didn’t see any way I could live with such chaos running around inside me.
But I did. I healed and started treatment to control my relapsing-remitting MS, and slowly, I started figuring out ways to do the things I wanted to do. Some of my plans went on unchanged. Others had to be dramatically altered. I’ve found that the limitations MS has placed on my life have made me a better problem solver. I’ve had to find workarounds I would have otherwise missed, and — here’s the killer thing — those revisions actually proved to be better than my original plan.
During the interview on “Hidden Brain,” Harford told Vedantam, “Sometimes bad news is just bad news. Sometimes an obstacle is just an obstacle. And there is no good side to be found. But very often when things go wrong, we need to stop and say, ‘Well, what could come out of this?’”
And I think that is the key to survival for MS patients, “unplayable pianos” that we are. Rather than throw up our hands and sit in a puddle of self-pity, we have to find the good, the unthought-of solution. This is something able-bodied people will never understand, something they will never be asked to face. For them, the tidy answers of life suffice.
Harford also said, “When everything is perfect, when everything is tidy, we’re on autopilot, and we’re not necessarily living in the moment. We’re not necessarily paying attention. And that’s a problem.” I think he’s correct. We humans crave perfection but dwell in imperfection, and it’s from that less than ideal place that the real business of living gets done.”
I guess part of me wants to and I guess must “Stay Positive” despite what seems to be a never-ending spiral of less than optimal events.
I like the comment of embracing chaos …(but structure and routine are also good !)
This journey is not over !
Make the most of what promises to be a dry and warmer weekend .