“How are you doing today?” asked my nurse.
I instantly burst into tears. I had been holding it together ever since Anthony, the aide, adjusted my pillow. I had come to the burn unit for a post-op visit and laid down on the exam table. “Are you comfortable? You don’t look comfortable,” Anthony asked.
“Not really.” Expertly, he adjusted my pillow three inches down. “Is that better?”
“Yes.” At this moment, my tears began to form. There was something about Anthony’s attunement to my discomfort which kicked me in my incredibly sore stomach. In fact, I had not been comfortable for five weeks, since my first of two major operations to graft my torso. (For more on my surgical issues, see here). I had been soldiering on, trying to ignore my discomfort, which was a 24/7 situation. But the kindness in Anthony’s chestnut brown eyes, his simple concern about any pain in my neck stirred all the tears I had been pushing down. So, when the nurse came in and asked how I was, I wept onto my perfectly placed pillow.
“It’s not a good day.”
“It’s been a really long journey, what you’ve been doing.”
“Yes, so long.”
This was the conversation I had at my recent check up, even though things are actually going well for me. No infection! Grafts taking nicely! Everything is healing! But I am so tired. I hurt. I continue to be uncomfortably bandaged from my chest down past my waist, with a massive new bandage on my right thigh. My constant companion, my wound vac "Walter" has been removed, (Hallelujah!), but I still have four open surgical sites. (For more about Walter, see here). I am, in fact, NEVER comfortable, Anthony’s efforts notwithstanding.
I sleep only with chemical assistance. I limp. I haven’t showered in five weeks.
Look, I am a positive person by nature. I talk to strangers and compliment their shoes. At doctor’s appointments, I always ask the nurse and doctor how they are feeling. I can spot the positive outcome behind any storm of dark clouds. I have spoken about resilience on TV and radio, using my own story as an example of overcoming terrible odds. This is my gig, and this is how I usually roll.
But not today. Today I am sad and tired. Today I might feel sorry for myself if I let myself go there. But that is one dark road I rarely travel.
“Why me?” I wondered recently, in the middle of a lonely, aching night. My open wounds throbbed. I tried to twist slightly in the bed, uncomfortably stuck in the same position. I was hot, I was cold. “Why do I have to be burned? Why must I go through this?”
“STOP!” said my cerebral cortex. “Stop that. It will get you nowhere. It’s the middle of the night. That is not a good thought for you. Just try to go back to sleep.” And so I did. I stopped that thought, the dark snake that would lead me into a treacherous dark jungle, and I went back to sleep.
But as I write today, that thought returned, and all my tears flowed. Why me indeed? I’m a good person (usually). I’m nice (usually). I help people when I can. I’m a good wife, mother, and friend (usually). I even send hand-written thank you notes. Why must I be severely burned, endure endless surgeries, still living the life of a disfigured woman? Why did I have to do this all alone as a little girl, lost in a burn ward with no parents around? My trauma of being injured and forgotten is so intense that even now, newly injured, when people show up for me, I feel astonished to be remembered.
I have carried such pain all my life, endeavoring to do so cheerfully, hoping that others would help me, because I had no one I could count on. And now, 54 years after my initial injury, I have this pain and discomfort all over again.
But, you see, I know the answer. Why not me? Life is painful and life is hard. Maybe not all the time, although for some, life is truly painful and hard all the time. I have clean running water. My refrigerator is stocked. I am never afraid for my safety. There are plenty of ways in which my life is not hard at all.
But even among my safe, first-world, well-off compatriots, there is plenty of pain. Dear friends die young from cancer or fall dead while shoveling snow. Sons die suddenly in the middle of the night. Beloved husbands transform into strangers and abandon their families. Children disappoint, sometimes heartbreakingly so. Addictions ravage our savings and alienate our families. We get downsized out of the only job we ever had.
In fact, if we live long enough, we are guaranteed to lose our beauty, lose our physical strength, lose many loved ones, and eventually die. That will happen to all of us if we are lucky and live a long life.
So, why me? My current ordeal is my life’s journey. I don’t know why. Maybe someday when I die I will learn why this was my life's path. Right now all I know is that that everyone, eventually, has their own ordeal. Awareness of this fact raises me out of self-pity into universality. Yes, I am in pain, and yes, it makes me sad. I also know that this is life. Life can be hard.
I also know that this suffering, like my previous bouts, will end. The earth will spin, days will pass, and my wounds will heal. Someday soon I will be out and about, just like before, only breathing deeper and feeling more comfortable. I look forward to that day very much.
Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader.