29 Oct 2023 A Few Post-Stroke Thoughts and Resolutions

Resolution 1: Pause to reflect, treating this stroke as an opportunity

Two re­ac­tions to hav­ing a zero-im­pact stroke feel nat­ur­al and easy. Pain­less, even:

1. File it away as bad luck. I’m not at risk for this… so… wrong time, wrong place, wrong col­lec­tion of blood cells in the wrong spot in the brain.
2. Shrug it off. I’m fine. No im­pact. All good. Re­turn to life as it was.

I’m choos­ing to look at this dif­fer­ently.

I feel su­premely lucky that I had this stroke and that it happened the way it did.

Ap­par­ently, I am at risk for stroke. After all, it happened. Now I know. Mod­ern medi­cine might not yet know why, but we know I am.

I was lucky it happened dur­ing the day, when I no­ticed. If it had happened when I was sleep­ing, I would nev­er have known. I sus­pect that If I had been sit­ting quietly in that meet­ing, not speak­ing up, I might not have no­ticed. Sure, I felt odd, but… coulda been caf­feine. It was my dif­fi­culty in speak­ing that made it clear to me that some­thing was wrong.

I was in­cred­ibly lucky that it has had no last­ing im­pact. Most stroke vic­tims aren’t as for­tu­nate.

Be­cause of this series of for­tu­nate events, I have an op­por­tun­ity to choose how to re­spond.

Ini­tially, these are my choices:

• As noted, to view this as for­tune, not mis­for­tune.
• To take this warn­ing ser­i­ously, to peri­od­ic­ally pause and re­flect on what could have been.
• To take the time to learn more about strokes, causes, and ther­apies, be­cause now it’s per­son­al.
• To cre­ate a plan and a set of ac­tions to change my course to re­duce the odds of re­oc­cur­rence, which is pos­sible even if we don’t yet know why it oc­curred.

Resolution 2: Live intentionally, facing mortality with no regrets

Two weeks ago, if you’d asked me when I ex­pec­ted to have a stroke dur­ing my life­time, I would have said “nev­er”. I most def­in­itely would not have said “Thursday morn­ing at 10am”.

But now, when do I ex­pect to have an­oth­er one? I have no idea. It could be any­time. If it hap­pens, it will ar­rive with no warn­ing, and for no ap­par­ent reas­on. It could have any kind of im­pact, ran­ging from none, to the liv­ing hell of be­ing trapped in a non-re­spons­ive body, all the way to death.

How do you cope with that? How do you pro­cess that?

This ques­tion of mor­tal­ity, of course, is some­thing that people have grappled with for all of our ex­ist­ence. It forms the basis of our re­li­gions and ar­gu­ably the basis of our be­ing hu­man.

I’ve faced severe health im­pact and the chance of death be­fore, but not with this kind of twist. The tu­mor I had ten years ago was be­nign. The vari­ous bike ac­ci­dents were re­cov­er­able (since I wore a hel­met). The work melt­down was tough and left scars, but I moved past it. Back sur­gery mi­ra­cu­lously re­solved a pos­sible life of pain and wheel­chairs. All of those gave me pause, but I’ve ef­fect­ively re­turned to full health after them.

This one’s a little dif­fer­ent. I may be 100% healthy by lab meas­ures, but I have a newly-con­firmed chron­ic risk to man­age for the rest of my life… men­tally, if not phys­ic­ally.

I spent a little time last week go­ing through all my old notes from those events, read­ing per­son­al stor­ies from many on the net, and per­us­ing lit­er­at­ure. What do oth­ers do when they face a grim pro­gnos­is, what could I learn from them?

There’s an aw­ful lot out there on how people handle the end of life. I won’t do any­one the dis­ser­vice of try­ing to au­thor­it­at­ively sum­mar­ize it here. One of the more pop­u­lar reads is by Bron­nie Ware, on the “Top 5 Re­grets of the Dy­ing”. Most of what I found was pretty con­sist­ent with her list.

A few clear, un­sur­pris­ing take-homes:

• Live your life true to your­self
• Fam­ily and friends mat­ter more than work
• Hap­pi­ness is a choice

As I look up briefly from puzz­ling over the mor­tal­ity prob­lem, these are my in­ten­tions:

• When mak­ing de­cisions about where to put my time and en­ergy, re­mem­ber that they are lim­ited and fi­nite re­sources
• Aim to make the most of my re­main­ing time on this plan­et, how­ever long or short that time may be

When I was in the midst of that stroke, I real­ized that my time as a healthy, act­ive, in­de­pend­ent per­son might be over. I was sad it was over, be­cause I have so much more I want to do. I may end up in that situ­ation again, but I am re­solved to be able to look back with no re­gret at where I put the time I have re­main­ing.

How to turn these in­ten­tions in­to reg­u­lar, prac­tic­al choices? Tricky…. Along the top of the white board in my home of­fice where I sketch pro­ject plans and track tasks, I have writ­ten “You are still a back sur­gery pa­tient”. That re­minds me to stretch… most days. Next to that I now have “You are a stroke sur­viv­or.” (Nope, that was not a goal.)

Resolution 3: Rebalance my life, focusing on my priorities and values

Hav­ing ac­cep­ted the stroke as a for­tu­nate real­ity rather than an ir­rel­ev­ant ran­dom event, and hav­ing de­cided to live even more in­ten­tion­ally go­ing for­ward… now what?

While I may have an­noy­ingly high odds of a stroke re­cur­rence, I don’t have a time line. Could be any­time. Could be nev­er. In dis­cuss­ing this prob­lem with a good friend of mine, he framed the puzzle some­thing like this:

Ima­gine you live 30 more years un­til your mid-80s. In all three of these scen­ari­os, you are com­pletely men­tally lu­cid for the rest of your life:

1. One year from now, you have an­oth­er event after which you are per­man­ently like what you were for those two hours. Un­able to talk. Un­able to con­trol your hands re­li­ably.
2. Same situ­ation, only ten years from now.
3. You nev­er have an­oth­er stroke event.

In all scen­ari­os, what will you wish you had done in the first year?

After chew­ing on this last week while walk­ing in the woods, here’s my an­swer:

1. With only a year of in­de­pend­ence and mo­bil­ity left to me, I would want to max­im­ize time with fam­ily and friends, and hike sev­er­al places around the world I haven’t been yet. But I’d also want to max­im­ize my pos­it­ive im­pact on so­ci­ety and tie up a num­ber of the things I’m do­ing now that feel im­port­ant to me. If those things didn’t line up with my cur­rent em­ploy­ment, I might stop work­ing to fo­cus on those. It wouldn’t just be just a year of sky­diving and powder ski­ing…. al­though ad­mit­tedly, I’d do a lot more of that in one year than I have up to this point.

2. With ten years… roughly the same an­swer. But I would make sure that my em­ploy­ment did line up with those areas of im­pact that are im­port­ant to me, and I’d prob­ably stretch out the ad­ven­tures a bit to be a bit more real­ist­ic with time.

3. Same an­swer as two.

Those an­swers helped il­lu­min­ate a few key points to me.

• I’ve spent a lot of time in the past think­ing about goals, pri­or­it­ies, and val­ues. I’m happy with how my per­son­al life is bal­anced. It’s the pro­fes­sion­al life that keeps get­ting in the way… :-)

• I joined Me­mori­al Sloan Ket­ter­ing in 2022 be­cause the work I would be able to do there is aligned with my val­ues and my job pri­or­it­ies, and be­cause work­ing at the in­ter­sec­tion of health­care and di­git­al change feels im­port­ant to me. This was a very de­lib­er­ate de­cision on my part. And, des­pite the fact that my mis­sion now at MSK is not what was de­scribed to me be­fore I joined, the align­ment and po­ten­tial for im­pact are ab­so­lutely there.

• That said the jour­ney with MSK thus far has been ex­tremely high-stress, with meas­ur­able im­pact on my health and over­all qual­ity of life. I have already been feel­ing the need to re­gain bal­ance and es­tab­lish bound­ar­ies. Hav­ing a stroke, and then reach­ing the con­clu­sions I’ve de­scribed here only fur­ther re­in­force the need to do so.

And so, the simple an­swer to the puzzle of “how best to pro­ceed for­ward” is “keep do­ing what I’m do­ing, with a few re­bal­an­cing changes”.

Broadly, the way I’m think­ing of these changes is along these lines:

• Med­ic­al ad­just­ments - take my pre­scrip­tions, then factor in any changes ad­vised by my phys­i­cians in the com­ing months. But don’t bank on that ad­vice chan­ging much of the situ­ation for the bet­ter.

• Fit­ness ad­just­ments - re­new my com­mit­ments to fit­ness and health routines in­ten­ded to keep me as healthy, en­er­gized, and act­ive as pos­sible. This in­cludes a pro­gram of cyc­ling, stretch­ing, nu­tri­tion, and mind­ful­ness, on a found­a­tion of get­ting enough sleep reg­u­larly. (That lat­ter has been a real chal­lenge while at MSK.) I may de­scribe my cur­rent fit­ness re­gime in more de­tail in an­oth­er note. Hav­ing a stroke has only em­phas­ized how in­cred­ibly im­port­ant hav­ing these kind of habits has been and will con­tin­ue to be.

• Be­ha­vi­or­al ad­just­ments at work - bet­ter util­iz­ing my time by ask­ing for more help from my team, pri­or­it­iz­ing time more rig­or­ously, cre­at­ing and stick­ing with bound­ar­ies, block­ing time to fo­cus, get­ting out more of­ten, and es­tab­lish­ing oth­er prac­tices to help im­prove the over­all ef­fect­ive­ness of me and my or­gan­iz­a­tion.

• Philo­soph­ic­al ad­just­ments - pri­or­it­iz­ing time with friends (old and new), en­sur­ing that I get out­side as of­ten as I can, tak­ing the time to write more (like this), tak­ing the time to dig deep­er in­to bet­ter un­der­stand­ing what’s im­port­ant to me and how I can best use my re­main­ing time, whatever that may be.

On­wards.