Questions Beget Questions

This might be a little different post (and probably a little longer). I’ve been recently wrestling with three big questions that are going to come to a head in the next six weeks or so.

• What can I do?
• What should I do?
• What do I want to do?

These are the questions that underpin whether I go back to work, and in what capacity. The beauty of the last few months is that my firm has been amazing in not putting any pressure on me to make a decision. I suppose that I have put the pressure on myself.

I am extremely lucky and grateful. I cannot imagine tackling a diagnosis of ALS without the support of colleagues and a firm as generous as mine. It makes me all the more motivated to lean in and advocate for those less fortunate than me. It makes answering these questions, actually, that much harder.

The original plan

When I was first diagnosed in December, I had the great fortune to learn right before our partner meeting when so many of us would be together in one place celebrating our partnership and talking about the future. I used that time to connect one-on-one with as many people that deeply matter to me as I could. Sitting down with my friends, colleagues, and mentors, some of whom I hadn’t seen in many months or even years, to tell them directly how much they meant to me, and what I was facing, that was a gift.

I continue to believe that I am so very lucky. This is a strange thing to say, I guess, when facing this thing. My friends, colleagues, mentors and leaders have always been so generous with their time, and the chance to sit with them to share this news and, more importantly, to spend time with them catching up, was precious.

When I told my leadership that I needed to take some time away to see what might happen with my body, there was no hesitation. “Send me an email, and let me know your plans.” That was it. For a firm that prides itself on process, it couldn’t be that easy, could it? Yes. It could. Because, while we pride ourselves on process, we pride ourselves even more on how we value our people.

My “plans” at the time, included taking six months off to travel and to see what happened to my body. And, I figured that during that six months, I would also get some clarity about the next six months. Well, here we are six weeks from the end of that six months. And, I am down to the three big questions, and I don’t know if I have clarity. The only clarity I have is that I didn’t magically NOT have ALS. It didn’t go away. We are about to embark on a month of travel to see some parts known and unknown, to experience things anew through a child’s eyes. Perhaps that will bring some more clarity. But, these questions linger.

What can I do?

This one is fairly straightforward. I am fairly lucky, I think. There is that word again, lucky. The progression of the disease appears to be relatively slow. I am feeling fatigued. Climbing the stairs is increasingly hard, but riding my bike is not yet. For this, I am grateful. My neck, back, shoulders and arms are generally and consistently fatigued. I am feeling like I am always on the last set of upper body day at the gym even when I’ve just gotten up from bed. And, sitting at the desk for a prolonged period of time to do work is difficult. I nap way more than I used to which is to say that I nap. Anyone who knows me knows that I’m not one to do that on the regular.

The conclusion, to the extent that there is one, is that working full time in the manner to which I had become accustomed would wipe me out. Gone are the days of hopping on multiple planes per week flitting off to client meetings in 3-4 cities per week, I think. And, working with teams at the white board for hours on end is probably no longer in the cards. Things would have to be different. The good news is that they could be. I just don’t know yet what that would be. I also don’t know yet that it is what I should do, which brings me to the second question.

What should I do?

Oof. This one is hard. Throughout my career, I have always been driven by three things, and I have always told people this that have asked me why I have stayed where I am for more than 20 years.

• The people with whom I have the privilege to work
• The problems that I have the privilege to work on
• The scale and scope of the impact that we get to make

In the last several months, the thing that has been missing for me the most is the people. I have missed the day-to-day interactions with the people that I have had the privilege to work with for the last 21 years. Every day that I showed up to work, I was surrounded by the smartest, the most compelling, the most fascinating and engaging people that I have ever met. They filled my cup each and every day. Every day, I would ask myself how I came to be here. How did I, a kid who was the first in his family to go to college and who studied theatre, come to find himself at a firm surrounded by the kind of people that I find myself surrounded by every day? It has been an absolute joy EVERY DAY, for 21 years and counting. Ok. Maybe there has been a day or two here and there…but, my point.

Stepping away from the scale of these interactions to a smaller world is a little bit scary. And, yes, I still get to engage with amazing people all the time. But the scale…It’s different, I suppose. So, this part is taking some contemplation.

Secondly, the problems…Over the course of my career, I have had the chance to work on some crazy things. And, while I won’t go into detail on much of it out of respect for the privacy of my clients, suffice to say there are things that in my wildest dreams I never would have imagined that I would have had a chance to have had a hand in. There were rooms in which I found myself and meetings in which I sat (or led) in which I, literally, had to silently ask myself, “Is this really happening?”

What I am most proud of though, in looking back on this, is that I can honestly say that the impact that I enabled my clients to have was measured not just in economic value terms but also, and most importantly, in human terms. We helped clients create better experiences for people getting access to health care. We helped clients get the care they needed when they needed it. We made it easier for people to get the care they needed. We made it more affordable for people to get the care they needed. We helped people get back to their lives after the pandemic. We helped our clients maintain access to care for those most in need. These might sound hyperbolic. They’re not. This is what has driven me throughout my career.

Where does that bring us today?

It seems to also be what is driving me now. I have not been able to sit still, so to speak, since stepping away from the firm. I have found myself on the front lines advocating for those of us living with ALS. I have a voice (for now), experiences, and a network of connections. I cannot sit idly by and NOT get involved when I can leverage those things to make a difference, if I am able.

And, Anne and I have been working on Talk to Me, Goose! for the same reason. She has started a small business, and like any start up, it’s getting off the ground. She put to use her amazing artistic and design talents and some of the things she learned as one of the PIs on the Roboceptionist project some years back, and it’s out there.

It started out as a solution for me to be able to preserve my ability to speak, but it quickly became a way for us to be able to give something back. If it could help connect others to their own voice, to reduce the level of effort for people to use their voice, to reduce the amount of stress for caregivers by connecting people with each other again leveraging technology to do so, why wouldn’t we? We have been looking for collaborators in the foundation community to see if we can scale the impact of it. We may have found one that can take this effort on, and we’re very excited about it. I have been helping a bit, so, I could go work with Anne on this as well.

It seems that What should I do? is a hard question that’s wrapped up in a gordian knot of other hard questions.

What do I want to do?

If there’s anyone out there who can answer this, please raise your hand. If you had some limited time to use your body, what would you do?

I suspect that we’ll do more travel whether I go back to work or not. I suspect that we’ll continue to do the things that we’ve started whether I go back to work or not. I suspect that I’ll ride my bike until that becomes too hard to do at which point, I’m sure that I will grieve not being able to do so anymore, and that will be very hard.

At some point, all of these questions will likely be answered for me. For now, I am lucky (gosh, there’s that darned word again) to be able to prosecute these questions fully and thoughtfully out loud, I suppose.

Here’s what I do know. I am incredibly fortunate (ok…just another synonym for lucky, isn’t it?) to be able to even ask these questions. So many people faced with this diagnosis don’t have this luxury. They have to figure out how to navigate a challenging health care system, how to make ends meet, how to care for their families and how to process all of these challenging emotions while also dealing with a failing body. And, yes, I have to do the same, but I am so very fortunate to have found myself in a place where by dint of luck, frankly, I can take some of the more existential questions off the table and only have to deal with some of these difficult ones. And, for that, I am and will be eternally grateful to my friends, colleagues, leaders and mentors who gave me every opportunity throughout my career to have the successes (and the failures) that I have had that have led me to today.

So, here we are however many words later having litigated these questions out loud and come, yet again, to no conclusion. Questions beget questions. We are off for a month of travel. Perhaps that will bring clarity. Perhaps not. What it will bring is joy, I’m sure, and perhaps some sorrow at times. I suppose that is life. Joy and sorrow experienced anew through a child’s eyes with questions that may remain unanswered for now.