What's getting me through tough times .

Neurology

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IT’S BEEN a rough time.

In September, my mother died. She was 93 and lived a long life but we were very close, and her death (following a horrific week in the MGH neurology ICU) was a blow. In her later years, during various hospitalizations, I took on the job of navigating her care, getting her home, while my sister managed the home care of our father, suffering from dementia. Each time I was determined to restore my mother’s health by focusing like a laser beam on the quality of care she was receiving and pushing her to keep going. She would say to me in times past, as a way to explain her attitude toward aging, “you have to push, you just have to push.” So I pushed on her behalf, I pushed until there was nothing left to move, and I always got her back.

This time the pushing seemed to be futile. Something was different. It felt like we were being drawn into a vortex, and there was an aspect of unreality to it. I became determined that I would get her home, in the belief that being home would be restorative. It was restorative in a certain sense: it was a way for her to let go, surrounded by the familiar objects of her home of 60 years. I was not surprised by her death as much as I was stunned and defeated by it. I had let her down; I had let myself down. That is how I thought about it then; it’s how I sometimes think about it today. I’m sure a legion of therapists would tell me that this way of thinking is unhelpful to my own emotional healing, and I understand that. But understanding something and acknowledging something are two different things.

I spent some time with her when she died, she and I alone in the dark of the living room where we had installed a hospital bed, because I wanted those final minutes with her, and I wanted to see what death looks like in the moment. I needed to acknowledge it, understand it, not fear it. I was devastated, but I could not show it.

We could not properly mourn my mother’s death because my father, suffering from severe cognitive loss, could not fully grasp what had happened and we were advised to avoid triggering agitation in him. So we literally went from my mother’s funeral back home to dad as if nothing had happened. We did that consciously, in a generosity of spirit toward my father, but I did not realize how much of an emotional toll it would later take on us.

Managing dad’s care after our mother died proved to be a physically and emotionally exhausting experience for me and my sister. We did the best we could to ensure that he had appropriate and compassionate 24/7 home care, and not a single day went by without one or both of us being there with him at dinner time. Even though we refrained from talking about my mother or her death, it was clear that at some deep level, despite his cognitive failure, he experienced the profound sorrow of her loss from his life. They had been married 70 years. He gradually declined, and one day just stopped walking and eating. My father died Thanksgiving night.

My mother was a formidable cook (and my father a formidable eater most of his life), so they were well matched. Thanksgivings for us were notable feasts, and my mother would prepare phased courses of eating through the day, with enough pies and cookies to feed a much larger gathering. On this Thanksgiving afternoon without her, and with my father slipping away, we ordered Chinese food take out, and I tweeted that we were carving the ceremonial Peking Dumpling for dinner. I tried to “keep it together,” as the saying goes, in the face of grief.

With the holidays approaching, I planned a Christmas week of dinners, rest, and relaxation at our place in Maine as a way to begin recovery from the experience of two parental deaths in relatively close proximity. I developed menus based on my mother’s recipes, and during the weekends before the holiday I baked dozens of biscotti from her recipe books. I splurged on wines and cheese and made my mother’s datenut bread (an old recipe, really good). It was enjoyably therapeutic and seemed to be a good way to begin new holiday traditions. But there would be no respite from adversity. The entire holiday season, a time we had hoped would be an opportunity to recover from the painful experience of the prior months, was instead freighted by unimaginable pain and anxiety, a much-needed time for healing forfeit to unanticipated medical emergencies.

The weekend before Christmas my sister (my only sibling) experienced a serious medical issue that required hospitalization and medical intervention. Three days after she was released from the hospital, my spouse complained about the “worst headache of my life,” which turned out to be bi-lateral subdural hematoma – basically bleeding between the skull and the dura that surrounds the brain. This happens to people who suffer traumatic head injuries; in this case it appears to have been caused by a slow bleed caused by what many of us would consider an uneventful bump on the head while cleaning out the trunk of the car. He underwent successful surgery, and is on the road to recovery.

A friend texted me that week: “How much can one person be expected to cope with?” A good question. You might imagine the questions I have asked myself. They are the predictable questions of a person who believes himself to be in the grip of unrelenting adversity, who wonders not simply “why me?” but also “what have I done to deserve this?” These questions are at some level religious or spiritual in nature. They assume some larger force casting down challenges, testing your endurance and resilience. It’s a form of magical thinking, the kind of thinking that many people go through in times of trauma. Joan Didion wrote about a different form of it in her narrative describing her response to the sudden death of her husband and the severe illness and subsequent death of their daughter.

Asking questions that have no answer proves an unhelpful way to manage a really awful situation. Feeling sorry for yourself provides no balm. I accept with equanimity the well-intentioned words of those who say things like “you are strong, you will get through this”, or “be strong.” I’m strong in many ways, but not that strong. For a long while, sleep was elusive or inconsistent. Family and friends have been helpful, but I’m preternaturally reluctant to impose too much on people. The reality is that everyone, even those most helpful, have their own lives to lead. Ultimately, you need to figure out how to manage things on your own.

There is a question I stumbled upon in a random Google search that seems both useful and productive: “Now that this has happened, what shall I do about it?” This question points to the importance of acceptance, and also of resilience. I think a lot about resilience in the context of my passion – sustainable mobility and public transportation systems. In that context, resilience means several things, including: Does the system work in trying circumstances? Does it adapt to challenging situations? Conceptually some of the questions I’d ask about the Blue Line are the same questions I’m asking myself about myself.

“What shall I do about it?” implies acknowledgment and acceptance of the situation, and a determination to approach it without passivity. That’s hard to do, because a battered soul is a passive one. There’s only so much a person can take.

“What shall I do about it?” leads to: “What gives my life meaning?” The values you adhere to, the ideas and ideals you are passionate about, these are the life rafts that you hold on to when you have the feeling that your whole world (paraphrasing Steely Dan’s Kid Charlemagne) is falling apart and fading away. Knowing and following your values is, I think (at least in part), the wisdom that Aeschylus wrote about: “pain that cannot forget falls drop by drop upon the heart, against our will, until comes wisdom through the awful grace of god.” The writer of Ecclesiastes had a similar insight: “in much wisdom is much grief, and he who increases knowledge increases sorrow.” The ancients understood the fundamental, inescapable link between pain and wisdom. And I see wisdom in that question: “What shall I do about it?”

One of the ways I cope with emotional trauma is to do my best to stay engaged in the counseling, advocacy, and teaching activities that give me satisfaction and help give my life purpose. For me, there’s newfound wisdom and resonance in the famous lines: “The woods are lovely, dark, and deep. But I have promises to keep. And miles to go before I sleep. And miles to go before I sleep.” It’s Frost’s way of saying passivity and withdrawal into the dark, deep woods may be enticing, but ultimately you have to follow your values. It isn’t easy. To do that, you need mental focus and discipline and that’s in short supply under stress. But I’ve found it to be essential, just as essential for me as binge watching Mary Berry cooking programs on BritBox to get me relaxed enough to sleep. Action and activity and comfort TV help me move to a better place.

And Twitter, despite its too-frequent toxicity, has become a place where I can lose myself in momentary distraction, testing column ideas, sharing my advocacy, making a (usually bad) pun or joke, communicating with people I wouldn’t otherwise know and who I feel connected to in a way that’s always a surprise to me, as I’m a confirmed introvert.

My ways of coping aren’t for everyone. I get that. They work for me. I wrote this because writing for me is a way to center myself, focus my thoughts, and share them through the community provided by Commonwealth. The writer and essayist Roger Rosenblatt once answered the question “why write?” in this way – “to make suffering endurable, evil intelligible, justice desirable, and love possible.” I share this to help make my own suffering endurable, and also because perhaps a few readers will find this useful to help them through their own times of challenge and grief.

I am still struggling. I’m not out of the woods. The recovery process, whether you are patient or caregiver, is a long and unchartered road. And I realize that my life will never be the same, that the events of the past five months have changed it permanently and materially, and in ways I cannot yet know or understand, and that’s pretty scary. Joan Didion wrote: “Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.” Her insight that life changes in the instant can either be a sword of Damocles over your head or a useful reminder that every moment of every day is worth embracing and enjoying and experiencing. And if you can’t, if the stress is holding you down, that’s fine. Don’t beat yourself up. Just move forward.

Meet the Author

Guest Contributor
What it all comes down to is hard work. Life is hard work. Staying emotionally strong in the face of adversity is hard work. Healing is hard work. Finding a way forward when circumstances are weighing you down is hard work. And the really hard part of it all is that when you are beaten up and battered by the exigencies of life, the best pathway out is the hard work of perseverance. One learns the meaning of personal resilience by moving through time as though through viscous waters. That is the essence of persistence, and that persistence brings with it hope, and perhaps the realization of goals, and ultimately satisfaction. And if that’s true, what else can a person ask for?

James Aloisi is a former Massachusetts secretary of transportation. He serves on the Board of TransitMatters.