Lately I’ve been considering how other people must think of certain words. I assume that for most, with the exception of first learning of the word “benign” as part of a vocabulary list in English class, they rarely think of it at all until it’s sudden reintroduction into a hushed conversation along with it’s ever destructive antonym, “malignant”. The idea of it is clung to as a palpable hope, and it is whispered in prayer as a loved one undergoes the biopsy of a lump. “Let it be benign.” After days of uncertainty and hours of surgery, overwhelming joy and relief is felt with the embrace of an ever-listening God when all that is found by doctors is benign. And only the echo of a quiet God is heard when the results show that it is not.
If I think of either scenario for any extended amount of time, I am both brought to tears and back to a lingering and sometimes suffocating sense of guilt.
When I received the diagnosis that I had a benign brain tumor, I was neither consumed with joy nor relief, but with validation and with a bitter frustration – one that I battle still. I blame my “inappropriate” emotions on the timing of the diagnosis, and particularly on the distant span between it and the onset of my illness. Two years after being discharged from ICU as a “medical anomaly,” my husband received a promotion requiring us to move to Iowa. I had taken two medical leaves of absence from my job as a high school English teacher, and as my condition had not gotten better, had finally made the decision to leave permanently. Up to this point, all of the various diagnoses I had received in Indiana were of the same theme: e.g. Migraines and/or Conversion Disorder, Stress, Anxiety, Depression, etc. And yet, while they continued to tell me that other that severe migraines, I was suffering from psychosomatic manifestations, my body and malfunctioning brain kept telling me that I wasn’t just “making all of this up.”
When a neurosurgeon from Iowa looked at my two-year-old MRI from Indiana alongside the new MRI from Iowa, and very matter-of-factly began said, “Because it has not changed in size or shape in the last two years, we can assume that the tumor in your frontal-temporal lobe is benign, I heard only the word “tumor.”
The problem had been in my head all along, but thankfully was actually lodged in my brain and not just in my psyche.
Thankfully? Was I thankful that I had a brain tumor because it meant I wasn’t … (It’s difficult for me to pick a word here, because so many race through my head as I think off what people thought of and still must think of me with my mystery illness)? “Lazy.” “Unable to handle stress.” “Over-dramatic.” “Crazy.” “Hypochondriac.” Honestly, yes – at first – I was happy. I even had a “brain tumor” party with the few friends I had made in Iowa over the past few months. I even sent invitations of an illustration of a brain with an open walnut placed in the frontal-temporal region (because I had been told by the neurosurgeon that my tumor was approximately the size of half a walnut). Projecting from the walnut was a thought bubble that said “Don’t worry, it’s benign!” At this point, I assumed surgery and recovery would be just around the corner, and then the long-awaited return to normalcy would be next.
It wasn’t. After an extended stay at another university hospital for testing, it was realized that surgery was not a viable option considering the location, the risks, and that even a successful surgery would not ensure that symptoms would change. I am still, over a year later, realizing that “normalcy” in my life will never be what I had grown up expecting for my adult life. Everyone goes through this, I know. We find out, shortly after college graduation, that the world isn’t our oyster. We take jobs for which we are either over or under-qualified. We move back into parents’ homes. We fail at starter-marriages and have unplanned pregnancies that transform our expectations altogether. I have never experienced the last of these, pregnancy scares, yes, but always unwarranted. At thirty-four, I regret my pleading prayers, “Please don’t let me be pregnant.” Now, I rarely pray, and when I do, it is more of a frustrated lament of, “I didn’t mean please don’t let me be pregnant ever.” But if I was able to make it through a pregnancy without the medications I take now, would I really be able to take care of a baby? What about the days when I’m sick? How do I hold a baby when I’m already struggling to get the right side of my body to work in sync with the left? It doesn’t matter. That is a worry that I do not need to have. I will push that worry to the recesses of my brain where I have pushed so many others along with my overly detailed blueprints for my life.
Of course I had elaborate dreams of what my future would be, but somewhere at the core of those dreams were only two basic plans. I would have a job, and I would be a mom. I had worried about whether or not I would do these at the same time. Now unable to hold a job or carry a baby, I am reminded how wasteful my planning was and how stupid I had been to be happy about the diagnosis of a brain tumor – benign or not. And yet, I can’ t simply stop planning – somehow I must adapt my dreams to fit the unchangeable elements of my life, being grateful for those people like my husband and my friends who have become permanent fixtures in my life. And accept that I am a medical anomaly while questioning the definition of the word benign.
benign: “a: of a mild type or character that does not threaten health or life; especially: not becoming cancerous b: having no significant effect.
- Meet Calvin, the Inoperable Brain Tumor (blogher.com)
- Brain tumor awareness month (q13fox.com)
- Letters: Brain tumor research needs an advocate in Congress (mlive.com)