A Little Understanding & Compassion Goes a Long Way

I’d like to pose a question. If you, or a loved one, were emotionally distressed from undergoing a double-mastectomy, how would you feel if I said, “Get over it! There are a lot of happy, flat-chested women in this world”? 

  My tumor was in a different part of my body – the part encompassing the essence of who I am. The Headquarters. The Command Post. The Brain. The organ that guides emotions, behavior, analytical skills, language, intelligence, personality, balance, decision-making skills, perseveration, as well as light and sound sensitivity, to name a few. 

  After my craniotomy for a brain tumor, followed by a medication toxicity, stark, non-healthy behaviors manifested. 

  I told people exactly what was on my mind – “You’re f*cking useless and should go home”! My reading skills dropped to a fourth-grade level. I questioned people asking why they made a particular comment. Apparently they were answering a question I had just asked, but I had absolutely no recollection of asking. 

  Daily skills were a challenge. Did I shower? Brush my teeth? Eat? Couldn’t recall my address or phone number. Many times the smoke alarm screamed at me, alerting me to the fact I apparently had begun cooking something on the stove which completely floated out of memory. 

  Occasional slurred speech and skewed balance resulted in being accused of public drunkenness. 

  Constant head pain and fatigue, major frustration at the loss of who I was and my inability to live a full life as before, lead to three suicide attempts. 

  Once I wrapped myself in a green garbage bag because I believed I was damaged goods based on the remarks of others. The emotional pain was so intense I began cutting my wrists. Physical pain felt much better than emotional pain. Friends and family leaving me confirmed, in my mind, that I, Cj, truly was damaged goods. 

  Back to my question. During my depressed state of trying to articulate to others how my brain injury was invading the essence of who I am and wanting to end my life, was often returned with, “Get over it! We all misplace our keys and forget things.” “Get over it! You look great and go out to hear music so, obviously, you’re fine.” Many said to me they occasionally have “brain freezes” and are happy so it’s no big deal! 

  My neurosurgeon referred me to a neuropsychologist. There was a year and a half-wait! During this waiting period, I vacillated between good days of teaching myself how to read, to cutting my wrists if I couldn’t remember something or was again told to “get over it”. Extreme mood swings were common. 

  People with brain injury can appear high-functioning; there isn’t always consistency in behavior patterns. Please understand it is outrageously frustrating when our brain disconnects and our emotions, behavior, intelligence or words are atypical from the expectations placed on us, or what is expected by society. 

  People with brain injury are often mocked, abused, abandoned, due to the changes in their personality. Sometimes people’s reaction to us can be more devastating than the disease itself. 

  Many people with brain injury fall through the cracks. Funding for brain tumor and brain injury research is still lacking. Treatments for brain cancer (radiating the brain!) often results in a worse quality of life. Less than one-third of adults survive five years after a primary brain tumor diagnosis. Death can result from a benign brain tumor. 

  Educate yourself and learn to work with those who have suffered a brain injury. It affects lives from infanthood to adulthood. It is often a silent, non-visible injury, destroying the organ that’s the essence of who we are.