I woke up just before 2 AM today, wide awake. As someone who has suffered from insomnia on and off for most of my adult life, this isn't an entirely new experience; but, considering what an emotionally draining week it was and how I barely made it to my bed to pass out tonight, it was somewhat surprising. I can usually sleep through the night when I am this tired.
It was four years ago today that my late husband Patrick had his first seizure that led to his diagnosis with glioblastoma. And, it just hit me it's not just the date that is significant - it was just before 2 AM when Patrick's voice roused me from my sleep, finding him sitting on the floor, looking through me instead of at me, saying things that could not be described as words because of the small but deadly tumor that was growing in his right parietal lobe. The exact time I woke up tonight.
The memory of the subconscious is an incredible thing. Apparently, I have some processing to do that is more important than a few extra hours of rest.
This has been a difficult week for me and my family. My 4 year-old niece went to the emergency room last weekend with a 106 degree fever that was making her hallucinate and ask my sister to get the "ooey gooey stuff" off of her. Just two days later my mom got really sick and was admitted to the hospital overnight. (They are both feeling much better now, thankfully.) Seeing my mother in a sterile, artificially lit room lying on a bed donned with overly-bleached sheets was terribly triggering for my PTSD, which I so intimately relate to Patrick's illness and death. The beeping of the monitors, the alarms going off in other rooms, the intermittent shouting of an unruly patient (which thankfully this time was not MY patient), the white board where my mom's pertinent information was kept and where I drew pictures of flowers and bunnies to try and make her smile - it was all too familiar. As I pulled a chair up next to her bed, I felt my pulse speed up. I lowered myself slowly while the overwhelming dread and panic bubbled up under my skin so palpably I thought it would come out my pores. I took slow, deep breaths and tried to hold space for my own pain and discomfort, as well as for the fear and concern I could feel emanating from my parents. It was hard, but I did it using the tools I have worked hard to accumulate.
I have spent a lot of time since losing Patrick, particularly over the last year, contemplating my own mortality. I truly believe that I have accepted the fact that someday, sooner or later, I am going to die. If I have any say over the manner in which it happens, I hope that I will be able to die well. I want to remain focused on quality of life rather than quantity. If I have a prolonged illness, I want to engage palliative care early and often. If curative treatment fails, I want to bring in hospice to assist me and support my loved ones. Thinking about these issues has brought me a surprising amount of peace.
What the experience of this week has showed me, however, is that I still have a long way to go when it comes to accepting the mortality of the people I love. I have not been able to approach the subject with the same measured detachment that I have been able to attain for myself. As I listened intently in that hospital room while my parents recounted everything the doctors told them, I found it incredible difficult to resist the temptation to morph into "crusader mode," donning my cape and letting everyone know what they needed to do. That is exactly what I did with Patrick. I thought if I just managed everyone and everything that was happening well enough, I would be able to control the outcome. I wanted to secure MY outcome, namely that Patrick would miraculously be healed and we would live happily ever after. I was so driven by this obsession that I was perpetually disappointed in what I perceived to be a lack of help from others, failing to see that I was not allowing anyone to help in a meaningful way lest they upset the delicate plans I had in place. I unwittingly caused myself and those well-intentioned people who were afraid to cross my path so much suffering because I could not, and would not, accept an end result contrary to the one I wanted.
There is a part of me that is terrified that losing someone close to me again will actually kill me. Losing Patrick almost did. It is the same part that caused me to isolate myself for years in the wake of his death in an act of self-preservation and a twisted hope that if I didn't let anyone get too close I wouldn't fall apart when they were gone, in one way or another. That scarred, broken piece of my heart went on high alert when I saw my mom in that hospital bed. It wanted to announce "Good news everyone - I am here now. You can all rest easy. I've got this." I sensed, though, that this was an opportunity to try something different. Instead of fighting the feelings and emotions that were being stirred up, I was able to observe them. I did not have to stifle them by taking over control and making other people feel small and insignificant.
This does not mean that I have to sit idly by, ignoring the experience I have as a patient advocate that makes me uniquely qualified to help my mom or anyone else who seeks my assistance. Hardly. She will be the first to tell you that I have still been pretty insistent in offering guidance for navigating the system as it relates to her follow-up care. My experience has given me insight that is useful, and it is important for me to offer it when it is asked for and welcomed. But, what it does mean is that I am able to sit with what's happening without taking responsibility for it. I can finally see that I am not going to be the determinative factor in how things turn out, good or bad. What a relief to realize that I am not God!
When I was three months sober, I had the serenity prayer tattooed on my side: "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." This week's experience allowed me to live that prayer in a way I have not before been able to. I cannot change the fact that the people I love will be broken, hurt, sick, leave, and die. What I can change is how I respond. I am grateful to the Universe for yet another opportunity to discern the difference.
Lisa O'Leary is a lawyer, cat mom, widow, sports enthusiast, truth seeker, soul searcher, meditator, and consciousness practitioner who is actively engaged in quieting down the mind to allow the song to play.