Life Happens

The most important sentence I remember from my Abnormal Psychology Class (c. 1968, with Professor Ira Iscoe at UT Austin) consists of 5 words:  Mental Health is Competent Coping.  Such an elegant statement in its simplicity and its complexity.

Many people view mental health as the absence of mental illness. Not so.  Iscoe's dictum (as I call it) acknowledges that we all experience stress, but that our mental health depends on how competently we cope with that stress.  The World Health Organization (WHO, 2004), has defined mental health as "a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community." 

Why is this on my mind, and why might you care?

Well, life happened to me in unexpected and very impactful ways over the past few years. And to get through it, I often thought of Iscoe's dictum when I got stuck moving forward.

Allow me to get personal. I met my wife Susan when I was a 17 year old freshman starting college. We got married the day after we graduated, and we celebrated our 53^rd anniversary in May, 2023. But our lives changed dramatically a few years ago, in ways that neither of us could have predicted.  Susan developed a neurological disorder whose specifics eluded the best neurologists at Mass General Hospital in Boston. I call it our “medical mystery tour.” One of the most difficult aspects of her condition was its unpredictability.

To respect Susan's privacy, I will not go into details about her condition, but I will mention at this point that she passed away in July, 2023.  I will be writing other posts about my encounters with the medical system and end-of-life care ... but the focus of this post is on the new identity I took on as her primary caregiver, advocate, medical coordinator, case manager, and air traffic controller. I did not choose any of these identities. Life happened, and there they were, layered on top of my transition to retirement that was underway. How does one cope with such overlapping crises? We each cope in our own ways, but I wanted to share a few thoughts about my journey that others might find helpful. It may be folly to try to make meaning of all this so soon after such a tectonic change in my life. But at the very least, I hope that writing will help me process my own grief.  Because for me, part of "competent coping" is figuring out how to see a future, especially in light of the fact that suddenly, I am feeling very mortal.

So how have I coped with these new imposed identities? I make no claims that my specific experiences will be helpful to you. I am just reporting one person’s lived experience, in hopes that it might at least raise new options for you to consider, should the need arise.

Was I prepared to take on these new roles?

In some ways “no” – I had never provided total care for another adult for a prolonged period of time. I certainly didn’t understand the detailed ins and outs of the US health care system. And I certainly was not an expert on neurological diseases, although I’ve learned a lot about what we know – and mainly, what we don’t know - about them.

But maybe I was prepared, in some ways:

-- I witnessed my father serving as primary caregiver for my mother in her last decade of life. I saw the care he took, and I honestly can’t remember his ever complaining or becoming angry or expressing resentfulness.  He set the caregiving bar very high.

-- I’ve served as academic department chair and PI on large grants, all of which require adroit multitasking, which was certainly a part of my new role.

-- I am a systems thinker, influenced strongly by systems theories I’ve been reading about since graduate school and writing about through much of my career.

--  I’ve also always cared deeply about the larger issues of life, especially the meaning of our own lives and our mortality. But my new situation made these abstract questions much more real and much more urgent.

In facing your own crises, what life experiences can you draw on as resources?

In addition to looking to the past, what are your favorite sources of wisdom to consult? 

Although I have a love-hate relationship with social media, I have occasionally encountered posts that deeply resonated to me, most often relating to music, art, literature, or spirituality.  Facebook is where I initially learned about the Anglo-Irish poet David Whyte, whose work has been a source of great inspiration for me. I have attended about 20 of his online workshops in the past 2 years and read most of his books of poetry and prose. He has a very rich website full of his work, and now also has a site on Substack. I am particularly drawn to his writings on mortality and the bigger issues of existence.  Mary Oliver has also written some brilliant poems, elegant in their directness. Walt Whitman has been an inspiration about agency and moving forward in life. And these are just three of many inspiring poets.

Music has also been a source of inspiration and comfort.  The global COVID pandemic propelled a number of choral groups into preparing high quality videostreamed presentations,  and I have been deeply grateful to two UK-based groups, VOCES8 and The Gesualdo Six, for their work. Both offer music that touches deep emotions in me, offering consolation and insight. I am especially fond of choral requiems – especially those by Herbert Howells, Maurice Durufle, and Gabriel Faure.  I have absorbed all this music on a regular basis through CDs, Spotify, YouTube, and any way I can. It’s not an exaggeration to say that music saved me during the pandemic. More recently, thanks to my friend Mike G. in New Jersey, I have become a great fan of Raul Midon. I love his upbeat music, complex rhythms, and positive messages. I have his playlist on almost every day, and my personal trainer humors me when I tell Alexa to play Raul. (He likes him too.) Raul is performing live in Paris in November. Maybe I should go?!

I’ve also turned to the wisdom of great thinkers from diverse spiritual practices, eastern and western. Some of their sayings have provided strong grounding for me during times of uncertainty.

Henri Nouwen, the Dutch theologian, said,  “You can’t see the whole path ahead, but there is usually enough light to take the next step.”  I can’t tell you how many times I repeated this statement over the past few years. It provided an important counterbalance to my strongly ingrained tendency (earned honestly as an academic) to plan for years ahead – next articles, next books, next conferences, next grants – these frequently have time horizons stretching across multiple years. But in situations of maximal ambiguity and urgency, sometimes the planning needs to be for the next moment only. Today, my next step will be to take a shower.  And then once done with the shower, my next step will be to brush my teeth. Very, very basic.

I have also found it helpful to embrace metaphors that embody what I am experiencing and make me realize that I am not alone in that moment. Even though we may feel that no one has ever gone down a similar path before, that is rarely the case. During some dark moments of fear and ambiguity, I likened my situation to living through the Battle of Britain during World War II.  For an extended time, London was bombed regularly. Although people could take shelter, no one knew where or when the bombs would drop, whether they or their loved ones might be injured or killed, when the war would end, and whether they would survive it. They knew it would end at some point in time, but didn’t know whether they would live to see that day. Maximal uncertainty.  In the meantime, they had to live their lives – go to school, go to work, take care of their loved ones, prepare meals, and so on. For them, competent coping was embodied in their mantra: “Keep calm and carry on.”

Support from friends and family has also been essential and invaluable. I will write more about them in future posts, but I would be remiss not to mention their significance and leave this important placeholder.

In closing this post, I’d like to offer a few insights from my lived experience about how to navigate the challenging circumstances that a sudden disruption can bring to “life as it was” and “life as you thought it would be.” (As I am fond of saying, “Humans plan; the gods laugh.”)

First, reach out and ask for help. I have been particularly bad at doing this – for most of my life, I have been the helper rather than the recipient of help, and I did not like to ask for help. But, through some of the writings of Henri Nouwen, I have internalized the insight that accepting help actually helps the person who offered it. People offer help because they genuinely want to be helpful – and by accepting it, you validate their identity as a helpful person. So if you need a rationalization for asking for help beyond the simple fact that you need it, there it is!

Second, I’ve come to realize that the US health care system is terribly broken – but it’s all we have, and so you need to make it work for you. One of the most problematic aspects is the siloed nature of medical care. Specialists are great, but who integrates knowledge of all the bodily systems and looks at the patient holistically? Such doctors are exceedingly rare.  Electronic medical records are shared within systems but not across systems. Doctors are also under extreme pressure to have their 15 minute appointment and move on to the next patient in line. You have to prioritize your issues and questions so that you don’t end the appointment with important loose ends. Be prepared. I will write more about this in future posts as well.

Third, there is a tremendous lack of resources for family caregiving in this country. Most people agree that the institutional care that exists for elders is shamefully sub-par. We saw how many thousands of elders died in institutional care during COVID. Staffing issues continue to be huge. When I contacted a resource agency in our region to have an assessment for caregiving options at home, they said it might take 5 weeks or more for someone to come out and just talk with us about our needs. What happens during an emergency such as ours, I asked? They offered their sympathy. By the time they were able to come to do their assessment, Susan had died.

Fourth and mainly, be kind to one another. You never know what burdens others are carrying – but believe me, they are.

In short, this journey has underscored for me our interdependence. Feelings of control and autonomy can be empowering, until we realize how illusory they really are. This is not an original insight, of course. But we still have the opportunity to cope as competently as we can. And that has to be good enough.

I close by recalling a conversation I had many years ago in the mail room of my department at the University of Minnesota with  a beloved colleague who passed away from cancer shortly thereafter.  I was complaining about a recent snow storm and all the shoveling I had to do. Jean looked me straight in the eye, and said, “Hal, You have been given the gift of shoveling.” Hmmm. Such a valuable insight. And of course you can exchange the word “shoveling” for whatever difficult task you are dealing with at the moment. “Hal, you have been given the gifts of being a caregiver and walking your wife home.” Such a simple and valuable reframe.

I invite you to contribute your thoughts and experiences to the discussion.

Until next time...