There Was Never a Way Out

Absence makes the heart grow fonder or so the saying goes. I’ve been without my children for more than 24 hours due to the extended Davie family helping me by hosting them for an overnight to manage school vacation and my teaching schedule. This was a break that was very much helpful and needed, and yet I missed them so much. Some of it is borne of selfishness – the house is unbearably quiet without them clamoring for snacks, card games, a buddy for shooting hoops, snuggles. No matter the reasons, or rather for ALL the reasons, once again I am incredibly thankful for those kids. As I look forward to their return, I hope that I do not put too much pressure on them to fill my own seemingly bottomless emotional needs…

My mind has not enjoyed the quiet of the last day. It has attempted to fill the silence with rehashing memories and seeking. Something. I do not know what. Or maybe I do – my mind is seeking to fix blame for this terrible pain and find a way out. One of those tasks has been accomplished. I blame myself. I do not actually blame myself for Chris’s death; I’m not all the way over the cliff of insanity just yet. His death I do honestly accept was inevitable, the ghastly end result of a tiny biological mistake that evaded the odds, eluded cellular repair machinery, and proceeded onto a deadly path of rampant amplification. No, I don’t blame myself for his death, but instead I blame myself for feeling the despair that consumes me now.

Looking back at the arc of Chris’s illness I see that this fits into a pattern of my behavior. I continually sought to anticipate what might happen so that I could devise a plan to manage it when it did happen. Actually this is only what I told myself, what I honestly sought was to understand every possible event so that I could prevent them all from happening. I subconsciously assumed that if we were aware of every possibility that we could plan our way out. The scientist in me remembers that chance favors the prepared mind and one thing I’ll proudly own up to is that I used to be an excellent student - what I lacked with respect to innate ability I could always overcome with sustained, determined effort. I could always pull out an A or, in the case I couldn’t, outsmart the system and take the class pass/fail to preserve my GPA. I leveraged that old steely will to understand everything I could about Chris’s illness, but astonishingly, I still failed in every instance to prevent the horrific outcomes…

For years, my obsession was seizure prevention and management. In retrospect, this makes sense. Chris was diagnosed after a general (grand mal) seizure which was traumatic for me as the only witness. In the earliest days of the brain tumor and intermittently for years, I laid awake for hours listening to Chris’s sleep sounds, vigilant for signs of irregularity. I needed to know what to do, to have a plan to stop a seizure before it got out of control, because I did not want to see him convulse ever again. Also, if he did not seize, maybe that would mean the tumor would be in check. We learned about the medication Ativan which is a fast-acting anticonvulsant. It could be taken in the event that Chris had an aura.  After perusing shelves of miscellaneous medical management devices at Walgreens, I purchased key chain capsules so that Chris and I could carry the rescue medication whenever we were out. This protective measure seemed successful – Chris had years without grand mal seizures and I gradually relaxed.

Unfortunately, once the tumor returned focal (partial) seizures became a common occurrence. There were periods where these occurred on a daily or even more frequent basis. Like the day he had seven focal seizures in one day. So much for my super powers… Chris diligently worked with his neurologist and made a plan – if he felt a second focal seizure coming on, he would take Ativan. Good. Great plan. I was comfortable. Except, what happens when he has another one after taking the dose? I hadn’t thought of that until it happened. Still, focal seizures seemed not to have a long-lasting impact on Chris and he learned to deal with them. Even a few in a day seemed to cause no irreparable harm. (Good thing I didn’t know about SUDEP back then, sudden unexplained death in epilepsy, something that happens with no possible prediction or prevention method.)

Then, the dreaded thing happened on 12/29/17, only a few weeks after a stable MRI scan. Chris experienced an aura that did not turn into a focal seizure but instead deepened. He took Ativan, closed his eyes, and concentrated on staying present. It didn’t matter, the aura still spilled over into a general seizure. This was a game changer. We had executed the plan perfectly and yet it failed. Worse, he came out of it unable to speak or move his right side normally and it took a solid 45 minutes to fully recover. A deep sense of foreboding settled in; my confidence was completely shaken. I called Chris’s oncology team in Boston. It was after business hours and the answering service somehow could not find him in the system. Finally, I spoke to a resident. She talked me through what I could do to minimize risk in the coming days since we were traveling. I grilled her on what I could do if Chris had another aura that did not dissipate with Ativan. She explained the dosing limits and I felt assured that in the future I could administer more medication to prevent a general seizure. Alright then, we had a new plan.

As Chris experienced more concerning symptoms in the fall of 2018 and then his MRI showed tumor growth, the foreboding feeling intensified. Chris’s right arm became less functional and he stumbled when getting off an airplane on November 12. I began to see that physical disability was rapidly setting in and I did not know what to do. Our house is a split level and there is no way to get in and out that does not involve stairs. On Friday, November 16^th we learned that his oncologist was leaving MGH. This was only a few months after an experienced, longtime nurse practitioner had retired and I felt that nobody had eyes on the situation or an investment in Chris. On Monday, November 19^th I called the Pappas Center and left a distressed message that I did not know what was going on with Chris’s care team and needed answers. A kind nurse called me back and listened to me explain that I felt strongly that “something” was on the verge of happening that I would not be able to handle at home. I worried about Chris’s mobility and the accessibility of our home. She stated that I should call MGH if something happened and we would make a plan. The following day we had an appointment and saw no fewer than three nurses who paid attention to our (let’s be honest, my) anxiety. With Thanksgiving coming, we talked about lining up some home health services soon.

What is the expression, something about the best-laid plans… Or maybe I was right before, something DID happen that I DID NOT know how to handle; nobody had serious eyes on this situation and there was no real plan in place for the events that took place. On November 30, Chris started acting strangely. Stupidly, it took me a few minutes to recognize that he was having a doozy of an aura and I better get Ativan on board. Too late – he started to seize. But this time, it didn’t seem that Chris was unconscious. He had all the body motions of a general seizure but was making eye contact with me. Sure enough, the seizing suddenly stopped and he was totally himself. We laughed about the absurdity! Our moment of levity dissipated quickly as Chris said he thought it might happen again. I put more Ativan under his tongue but he still convulsed a second time, this time more violently and he was definitely unconscious this time. Once again he came to relatively unscathed, but he thought it wasn’t over yet. Chris took more medication, but still had another seizure. This was not going according to the plan… I had given the maximum dose and there he was, seizing in the living room chair again. A sick sense of dread started to set in. I called MGH and the resident called me back almost immediately. “You need to hang up and call 911, he may stop breathing from the Ativan.” Wait, I thought the team had told me I could give that much. That was my plan and I relied on it when I needed it. Well, so much for the plan. After Chris left in the ambulance I assumed that the EMTs would have everything under control, but apparently he seized again and they gave yet more medication and then the wheels nearly fell off the bus. As I pulled into the hospital parking lot, my phone rang. An ER doctor was asking me about what my husband’s wishes were regarding intubation because he wasn’t breathing well. Dread turned to panic. This was not at all what we expected at the end… I was not ready for this night to be the end despite my intellectual acceptance that Chris would not be living much longer.

While Chris did survive that night, he was never the same in terms of physical ability. He came home from the hospital by ambulance because he could not walk. Hospice services came that evening, but nobody evaluated our home or asked me how I would handle helping a 5 foot 10 inch man who couldn’t walk to the bathroom. The wheelchair they delivered barely fit in the hallways. It was the beginning of a terrible four weeks. I have not been able to let go of being angry that some of the difficulties could have been lessened if only someone had been paying attention to the trajectory of Chris’s right-sided weakness and done something in advance to help us realistically plan for the end stage. Entering into home hospice in an emergency situation is not ideal; it’s better handled with an initial home evaluation which might have revealed the deficiencies of our house for handling the challenges. Maybe an appropriately sized wheelchair would have been ordered instead of whatever was available that scraped the walls and required that doors were removed to fit it through thresholds.

It’s all water under the bridge now, I suppose. Or maybe I will take part of this piece and turn it into a letter for the Pappas Center to try to help some future patients. I’ll have to take the anger out and be more factual, more constructive. Chris was never angry about these and other sub-optimal things that happened with respect to his care in the same way I was. While I was always quick to place blame on the medical team because they had knowledge and experience we didn’t, Chris always erred toward forgiveness and moving forward. He was so wise. Anger would not have given him one more minute of life, and even if it did, the quality of it would have been poor by spending it on being angry. He continues to teach me now that he is gone. I still struggle to implement his philosophy but I recognize the infinite wisdom within it.

But back to my original focus. I see that in the same way I thought we could avoid major mishaps and trauma by being educated, I thought that the way we had accepted Chris’s long approaching death would allow me to avoid the worst of the emotional pain when it happened. Surely I would not experience shock or bargaining or denial since we expected and planned for Chris’s death. That would defy logic and we had been so careful to be as pragmatic as possible.

Oh, how wrong I was. I have never been more wrong about something in my life.

While the medical situation steadily worsened over 2018, somehow Chris was still himself and hung in there for round after round of bad news. We would endure unanticipated symptoms and horrific news, but still be able to talk it over and cry together. As we both expressed in many ways, we became closer than ever in the last year. The pain of separation is just as piercing as it would have been in the instance of his unexpected death. Maybe more since we used the advanced notice to talk intentionally and love deeply and treasure the gift of being together. No amount of time would have been enough or prepared me to lose Chris.   

Last night as I railed against the desolate silence in my house which contained no sign of any of my family members, I could not bear it for one more second. I fled to the library. I searched through the biography section to find The Year of Magical Thinking by Joan Didion, another of the memoirs I had read in recent years. I sat at a table in a deserted reading room, turned on a lamp to soften the harsh fluorescent light, and read for more than an hour. The familiar words of this exceptional writer helped me. Despite her brilliance, Didion also struggled with irrational lines of thinking in the wake of her husband’s sudden death.

“Grief turns out to be a place none of us know until we reach it.”

Yes. Yes. There had been absolutely no way of knowing ahead of time. Therefore, I could not have avoided this pain. Thank you, Joan. The kinship I felt with Didion intensified as I read. She also felt worse after her husband’s funeral. She put it this way:

“We have no way of knowing that the funeral itself will be anodyne, a kind of narcotic regression in which we are wrapped in the care of others and the gravity and meaning of the occasion. Nor can we know ahead of the fact (and here lies the heart of the difference between grief as we imagine it and grief as it is) the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself.”

Didion articulated it eloquently but I’ll just describe it as operating out of robot mode. Chris’s memorial service was no problem. In fact, it was strangely enjoyable to talk with so many people who loved him. A psychologist would probably call it being in a state of shock. What is more, my recent spells of deepening despair during which I cannot bear to imagine an unending succession of silent evenings, nor comprehend my solitary future, have been validated.

Finally, Joan Didion also felt so close to her husband, so much one half of a perfect whole, that she could not imagine going on without him. She wrote:

“I remember thinking that I needed to discuss this with John. There was nothing I did not discuss with John … I did not always think he was right nor did he always think I was right but we were each the person the other trusted. There was no separation between our investments or interests in any given situation.” 

My evening of reading (and I’ll be truthful here, yet more leaking of tears in the library) did provide something I can’t quite name. I am not remotely close to calling it healing. Resonance is a word I often reach for and, I see from re-reading, validation. It is some kind of recognition of the destiny of being human: nobody escapes unscathed by loss in some form. I’m not special and apparently not as odd as I have feared.

As it turns out, there was never any way out. Just as there was no way to avoid the inevitable death of Chris, there were no real measures that could be taken to soften the blow. The love we shared was the most honest, precious thing I’ve known. The loss of one half of our partnership could not be lessened no matter the amount of preparation.

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Writing has been extremely therapeutic. As I wrote about Chris’s seizures on 11/30, the memory of sharing incredulity and laughter between the first and second seizures came back with crystal clarity. I know it might seem crazy, but I am smiling thinking of it again now. Obviously not because it happened, but because that moment was so representative of how we were in it together. Chris feels close to me again right now. Now that I’m alone, I’ve been worried that my memory is not accurate and I made up how close we were. But no, it was real. It was rich. We understood each other fully.

While I would not want him to have to go through his final decline again, I would give anything to have even a day of difficult time back. I love him so much. Here we are on 11/20 on a “date” before going to MGH exactly three months ago. We were at our old stomping grounds, the Cambridge Brewing Company. It was a really nice time spent reminiscing and just being together. This was the third to last time we went out together and probably the happiest of those last three. I see the effects of the tumor on Chris's face and exhaustion in my eyes, but mostly I see his kind, gentle self and remember a treasured day.